Why I Rarely Talk About Having a Chronic Illness

Fair warning before you read. This story involves me crying in a bar in San Francisco.

This week, there were a couple of really great pieces about having a chronic illness that came into my Facebook feed. That, coupled with the aforementioned tears I shed on Wednesday night related to my illness made me think it was probably time to write another piece about what it’s like to live with rheumatoid arthritis.

The first time that I openly wrote about having a chronic illness was in 2012, which I’d encourage you to read. The cliff notes is that I have an auto-immune condition that is slowly eroding my joints. I had to have both my hips replaced when I was 16 because I couldn’t walk. I rode a Segway around in college rather than be in a wheelchair. I have a limp that will probably never go away, and I live with a moderate to severe level of pain every single day.

In spite of all this, I lived in Latin America for two semesters in college, and am pretty proud of my career in startups at this point. I’ve done a lot, but there are a lot of things that I wish I could do that I simply can’t anymore.

The worst part is how isolating the experience is because of how unfamiliar it is for everyone else, and to be honest the topic of conversation is a bit heavy and not everyone wants to stop feeling good long enough to engage it. If you have a chronic illness, you don’t get a choice in the matter. You simply have to live with it.

But by writing about this part of my life, I’ve found a surprising amount of strength. There is something really powerful about being publicly vulnerable about our weaknesses and shortcomings and struggles. Sharing our fallibilities with the world humanizes us, and offers implicit permission to those around us to cut themselves slack when things are less that perfect, or when they fall short of how they believe their life *should* look.

I write and publish about these things because, 1) I need to for my own sanity, and 2) I believe that other people are struggling with their own demons and if my story gives them strength or encouragement then I should share it.

Writing about it is one thing. However, I rarely like to talk about chronic illness with anyone.

I’m pretty stoic about things most of the time, and don’t really let it get me down or shift my focus. I generally accomplish this by making sure that I don’t think or talk about what’s going on with my body with most people, because if you don’t have chronic pain, it’s impossible to relate and I find the experience is rarely worth trying to explain. People try to listen as well as they can, but their responses are usually some variation of “have you seen a doctor about this?” or “isn’t there a cure?”

Yes. I’ve seen an absurd number of doctors. Spent a lot of my life in hospitals, and have spent time, energy, and money pursuing solutions across the spectrum. And no, there isn’t a cure. In a world where medicine is accessible and effective, and there is an Uber for everything springing up, some things simply do not have a solution. The only solution is you must carry the burden.

This isn’t a reality people are as familiar with as I’d like them to be, but often the only way you get to the point where you empathize with a bad situation with no solution is having been through a bad situation with no solution yourself. That’s a shitty place to be, and I don’t really wish it on anyone.

Most people are fortunate to have relationship with pain and illness limited to breaking a bone or having a really bad flu. There is a clearly defined curative treatment and as bounded context. For the majority of broken bones, you cast it and after 6-8 weeks the bone is basically as good as new. Maybe you notice a dull ache when it rains, but you haven’t lost much mobility. For the flu, you take a round of powerful antibiotics, manage your fever, stay hydrated, and you’re fine after about two weeks.

There is (currently) no cure chronic illnesses like rheumatoid arthritis. And although I stubbornly hold out hope for a cure, I have to live my life with the knowledge that one does not yet exist. Taking a round of antibiotics and having things go away is simply not a reality.

 

There are medications the doctors will give you that can essentially modify or reduce the inflammation and aggressive joint destruction that is happening. At best, those can reduce your symptoms in the long term, and help you manage your life better and they don’t have many side effects.

At worst, they may temporarily reduce symptoms but bring massive side effects.

For example, I was on high doses of corticosteroids to treat the symptoms of the disease (not anabolic steroids that athletes take) for a few years. Those made me feel well, but also made me gain 30 pounds in a few months and stunt my growth at age 14 (I’m fortunate I was already six feet tall). Those drugs were also the reason the cartilage in my hips rapidly deteriorated, forcing me to have them replaced with ceramic ones in order to walk again.

These are all things in my past that I generally do a very good job of not thinking or talking about because thinking and talk about these things doesn’t serve much purpose. It just makes me sad.

But sometimes that sadness demands to find an outlet. Tears will usually suffice.

This week, I was having drinks with a good friend; someone I trust an incredible amount. We hadn’t caught up in a while because of massive changes in our lives the past few months, but finally made time to get out to Wilson and Wilson, one of the ridiculously trendy cocktail bars in San Francisco that overdoses on pretense, but more than makes up for that with delicious and potent cocktails.

The conversation was going as it does between to good friends who haven’t spoken much in a month or two. A lot had happened for both of us, most of it really good, some of it rather challenging, and we were telling each other all the adventures we’d had since we last met up, and drinking really delicious cocktails in the process. I’m grateful for the alcohol that night. I needed the catharsis.

We had covered a lot of the major events, and then my friend abruptly and ask me how my body is doing. As I said, normally I would ignore this. The problem was, she didn’t ask it in a way that I could brush off or ignore like I usually do.

Normally I give people a pat answer because, as you’ve already read, the conversation is a sad one, people don’t understand it, and it just brings everyone down.

This time was different. She actually really cared and wanted to know how I was doing. She asked the question with so much empathy, and with such an awareness of how much of a struggle things can be that I couldn’t avoid the emotions of it all.

Suddenly I found myself weeping at the bar of this very very trendy San Francisco cocktail bar. I’m rarely overcome by tears, but something had turned on the plumbing to my eyes. My eyes welled up and I felt the warmth running down my face. The tears came easier than they ever have, and as much as I was slightly uncomfortable crying in the bar, I also felt the weight of a million things falling off my shoulders so I didn’t fight them. I simply set my forehead down on the bar and wept.

I wept for the way my ankle joints are frozen and fuzed together and how some of my toes are beginning to swell and feel pain. It may be only a matter of time before those bones begin to fuze together too and my feet become brittle. I wept for the way on the weekends I sometimes don’t know how to get out of bed. I wept for how helpless I feel to do anything other than put on a strong face and keep moving forward through the pain. I wept for the way pain isolates me from the rest of the world, sapping my energy and resolve, and leaving me with an experience of life that nobody relates to, but it’s a really good thing that they don’t have any first-hand experience.

All of this came streaming out of me. It was a rare moment that wouldn’t have happened without the prevailing feeling of safety of being with my friend.

Sometimes that’s what it’s like to have a chronic illness. You carry everything you can for as long as you are able, and then when you cannot carry it any further you break down for a moment to let the emotions run out of you. The tears and the blood of the moment can wash over you and cleanse you for a while before it’s time to pick up your baggage back up and start walking again. In those moments, it’s amazing to have someone there with you.

My friend graciously picked up the check and split a cab with me home. It was one of the most meaningful nights I’ve had in a little while.

So for those of you that are struggling with something, I don’t have much to say other than keep struggling. It’s better than giving up.

For those of you that are with someone who is struggling, just be there with them. Don’t offer advice or tell them how they should be feeling. You probably don’t understand and they definitely know that. The most meaningful thing is to be there with them while the tears are flowing and the pain would otherwise make them feel wholly isolated from everyone. That’s a life-affirming gift you can give.

Hope this helps.

Austin W. Gunter

 

austingunter

90 comments

  • Thank you for this. I do find that talking about it is just I satisfying. Writing helps a bit as a pressure outlet. People are kind, but…

    I wish you peace and low pain days.

    • Hey Colleen,

      Thanks so much for reading. I wish you peace and low pain days as well.

      -AG

      • I suffer from Chronic migraines, and i’m only 18, i’ve suffered with it for a few years and people say “i know how you feel i have a headache right now” like please you truly do not understand having chronic migraines, i currently take 3-4 medications for it and do injections for the migraines but nothing fully takes away, they always come back. its something i have to live with. i loved your article! i found it comforting to read. i wish you low pain days and a happy life!

        • Hey Allysa,

          Try not to hold it against anyone when they try to relate to you. They don’t know any better, but they’re trying to connect with you in those moments. They *don’t* know what it’s like, but it doesn’t mean they don’t care, so I’ve found it better to just let them. I actually hate it more when people say, “Oh Austin, my [twisted ankle or whatever] isn’t anything like what you go through.” Pain is relative. The worst pain you’ve felt is the worst pain *you’ve* felt, regardless of my own experience of pain.

          Keep your chin up. There are ways to get rid of migraines, and if you keep looking you’ll find them.
          -AG

        • Allysa: My father has suffered from migraines for most of his adult life. For a time, he even got them daily. Pure oxygen helped him. He literally got a tank and kept it in his home office. When he got the aura signaling a migraine, the oxygen staved it off. Maybe you’ll find relief from that too if you haven’t already explored that route.

        • Hey I also suffer from chronic migraine it’s very difficult dealing with it on a daily basis xx feel free too contact me by email if u want too talk

  • Austin,
    Thanks for your article. You put into words what I’ve been going through and what I’m sure many others are also living with…

    • Hey Jon,

      Thanks for reading. I hope if I’ve given voice to an experience we all share then that helps cut through some of the loneliness that pain brings.

      -AG

  • Amazing reflection of RA and chronic illness. I feel like you wrote that about me. Maybe the more we talk/write/share about it, the more people will understand? I like to hope so.

    • I hope that the more we talk about things the more people will understand. That’s a big reason I try and be public about this stuff. The more familiar people are, the more they can empathize.

      Thanks for reading.
      -AG

  • I had an emotional collapse yesterday. After a week of pushing back and back my flaring body in order to get my chronically ill 14yr old back in school everything fell apart. I sometimes wonder if I have PTSD from the 3 major surgerys back to back in 6 months.
    Thank you.

  • Fabulous story. I had a “meltdown” in front of my husband and it just felt so damn good!

    • Hahaha, I don’t recommend daily meltdowns, but sometimes you just need to let go.

      -AG

  • Thanks for writing this. There are a surprising number of conditions for which there is no cure. As you noted, often the ‘treatments’ designed to stop, or slow progression make the patient feel worse and/or have their own unintended negative consequences.

    I am fighting the RA battle while my husband is succumbing to kidney, liver, and lung failure. His conditions all result from the numerous drugs and interventions offered that were intended to impede the progression of his congestive heart failure.

    Chronic illness is poorly understood and not easily discussed. I think some people are uncomfortable with having to acknowledge how little the doctors and pharmaceutical companies have to offer in some cases. I also think we live in a society that is very uncomfortable with not only chrinic illness, but also with death and the dying process. But that’s a different topic altogether.

    Kudos to you for what you’re doing.

    • Hey Nan,

      Your story and your husband’s sounds harrowing. I wish you guys the best in everything in spite of the struggles.

      -AG

  • Thank you….I needed this. You described all I’m feeling right now….tired of feeling terrible, tired of the pain and tired of being tired. Tired of having RA. It sucks.

    • Mel, it’s the absolute fucking worst. I’m glad that the post resonated with you. Thank you so much for reading.

      -AG

  • This piece very much rang true for me too. When people ask me how I am, most of the time I reply with “Don’t ask”. My poor husband is the only one who hears all of it and quite frankly it is too much. I breakdown once every 6 months or so and the last time it was because I realized that I will probably live another 25 years and I didn’t want another 25 years of pain. Having a supportive partner certainly helps but the guilt I feel for burdening him adds a whole other dimension.

    I’m glad you had your friend there to support you. Sometimes it really is too much to bear alone, and that’ sock.

    • Rachel, I definitely feel the not wanting to burden anyone else around you. That makes complete sense to me. I also get the desire to not want to suffer for another 25 years. I’m 29, so I’ve got a few more than that to go. One day at a time is all I’ve got :-/

  • I Get It. As, I was diagnosed quite young myself. Tough times calls for strong minds. Everyone tells me, I’m a strong Super Woman but I just deal, Everyday, I deal. I laugh, I cry, I pray, I go on. God is my strength. We all need a purpose & that’s mine. May you endure more painfree days then none. God Bless!

    • Thanks for reading and commenting, Elizabeth. Every day we simply need to deal sometimes.

      -Austin

  • Thanks for describing RA so eloquently. I have been on a journey recently with my younger cousin who has RA. We grew up on the same street and she is like a sister to me. Her parents are long-deceased; she has no siblings; and never having married, she has no children. So when her health issues, and there are other serious ones besides the RA, landed her in the hospital with a wound that would not heal in spite of surgical procedures, she had finally come to the point where she could not return home again. I am her P.O.A. and the closest relative she has, so my husband and I had to sell her car and clean out and sell her home for her. The hospital had placed her into a nursing/rehab center with poor Medicare ratings, and which was too far for us to drive to regularly. So, I researched, and called, and applied to CCRCs and nursing/rehab facilities until I found one closer and with higher ratings. She moved in mid-November, and we sold the house and went to settlement on December 31, 2015. I could cry for what she has to endure and what she had to give up. All I can do is be there to help her in whatever way I can. Her father had RA as well, so she knew what that diagnosis meant, but she doesn’t even have the luxury of being able to take an immune suppressant. If she does, the lymphedema in her legs gets worse and she has infections like MRSA to deal with. People, even those working in nursing facilities, have to be educated about RA. We have to continually tell them that physical therapy cannot resolve the situation, only help to maintain some body movement, and that some days the pain will be too great for her to move much at all. We try to inform those that work with RA residents that the disease is insidious and progressive, and they must follow the lead of the patient in helping him/her to deal with the daily struggles.

    • Catharine, that story breaks my heart and helps me realize how lucky I am to be this functional. I’m really inspired and humbled to hear how you and your husband have cared for your cousin. I think that truly makes all the difference in the world.

  • I Get it. I was also diagnosed at a very young age. A hard pill to swallow but this is my destiny.
    I laugh, I cry, I pray, I go on. The pain, Man, the pain. Overwhelming, confusing, draining.
    It’s strips you of your dignity of what could of been if….but, I go on. It’s a lonely life to lead with
    few to understand. I am called a Super Women by many but I just deal, Every Day, I deal. The silent
    struggle, a smile in the moment, a cry in the heart. My strength, is my God. He guides me in my darkest
    hours & lifts me to light. We all need purpose, he is mine.
    Austin,
    May you have many painless days, warmth, serenity & purpose always. Thank you for the great read!

    • I remember the first time someone told me “you’re inspiring” cause of your pain. That reminds me of people calling you Superwoman. Frankly, I’d rather be much less inspiring and have much less pain.

      God bless you, Liz.

  • Great article…thanks for sharing your experience. Sometimes, I feel I’m getting to that point in my day to day dealings with diabetes.

    • Thanks for commenting, Bryant. It’s got to be similar with all bad illnesses.

  • I seldom talk about having RA; even when I know people really care and ask how I’m doing or feeling, I always reply with, “good, I’m doing really good.” This always ends that conversation topic, I know if I said how I was really doing or feeling I would have a major meltdown and probably make the other person feel like they were sorry they asked. It is exhausting having this disease, but it is even more exhausting feeling sorry for myself so I guess I prefer to pretend I’m good, real good. Thank you for sharing

    • Di,

      It’s super hard to not want to bring anyone else down with your pain. That’s part of why my conversation with my friend was so meaningful. I finally had a chance to break down and just feel sad for a bit. Sometimes we really need a place to just be vulnerable and weak.

      Thanks for reading and commenting.

  • I don’t know you, but saw this posting on Facebook. My niece and sister-in-law both have rheumatoid arthritis and although I’ve had nothing as serious as an auto-immune disease, I’ve had long term health issues, so I can relate somewhat to this issue. I’d like to give you an unsolicited recommendation.
    If you haven’t come across this book, you may want to have a look at it. The Wahls Protocol – How I Beat Progressive MS Using Paleo Principles and Functional Medicine by Terry Wahls, M.D. (from the cover of the book, A Radical new way to treat all chronic autoimmune conditions). Of the many things I like about this book, is the fact that she is a doctor and she beat a very serious disease following what she lays out in the book. At her lowest level, she was confined to a wheel chair. She’s a clinical professor of medicine at the University Of Iowa Carver College Of Medicine in Iowa City.
    http://terrywahls.com/
    There are many books out there that cover the topic of functional medicine but this is one of the best. I can tell you from personal experience that changing my diet was the most powerful thing I did to turn my health around.
    I wish you all the best.

    • Connie, thanks so much for sharing. I’m about to go on a 30 day cleanse based on similar principles. Diet has been a huge factor for me, and I’m getting much more committed to it this year.

  • So perfectly written, and I think this goes a long way toward explaining our experiences. I got arealatively early JRA diagnosis, and a very slow progression. I was able to choose, and perform in a physically demanding job until my late 30s, when I had to chose a less physically demanding way to make a living. I made modifications and have been able to stay in a job I love until last year, when the need for multiple surgeries, made keeping up impossible. Im in school, working toward competence in a new field. You’re right, no one wants the truth about how we really feel. I don’t even want to think about RA let alone explain it to someone else. Thanks for presenting this viewpoint. It’s valuable.

    • Hey Robyn,

      I’m glad yours was mild. Mine has been pretty aggressive. Depressingly so at times.

  • Thanks heaps friend. I always feel stuck in a unwinnable position of not wanting to complain and burden but wanting them (partner, kids, fam) to know….lonely but guilty, brave but resentful.
    Do I work out today because I’m in pain or rest myself? Do I let people help me or push through? Do I have a lie down and leave the dishes for hubby or ignore my own needs? A constant battle in my head as well as my body…wishing you a 2016 with more good days than bad. 🙂

    • Hey Emma,

      I know that battle hardcore. Sometimes I let myself rest when I shouldn’t, and sometimes I push through when I shouldn’t. It’s all part of the battle.

  • In the midst of a flare and putting on the liar face–“I’m OK–just a little stiff today”. Your words opened up the floodgates and I needed to have that happen. Your description of Prednisone was so on target–I call it my most evil, best drug.
    I have other auto immune issues as well–so between Polymyalgia Rheumatica and RA I can hardly discern which is the culprit–Hoping for better days for us both. Keep speaking your eloquence.

    • Hey Ellie,

      I know that flare-up feel. You just have to push through it :-/

      Have you tried any dietary stuff? I’ve found simplifying my diet to veggies and good meats and avoiding most grains and starches makes a massive difference in how I feel. Check out the book, “It Starts With Food” and do their 30 day diet. I suspect you’ll feel a ton better.

      Thanks for reading and commenting.

  • Thank you for your words. I feel your pain literally. Wasn’t diagnosed very young but for 12 years have mostly hidden it from employers, coworkers, acquaintances, etc. Family and friends that say they understand…DON’T… and get angry or frustrated when you give in to the pain and cancel plans or have to shut down for a weekend. I try to stay positive and have become a confidant to several recently diagnosed. I cry with them and for them. I appreciate you sharing your story. Hang in there.

    • Hey Connie,

      I’ve been lucky to have a supportive family who did everything they could for me, and when they haven’t understood my pain, they have clearly experienced pain just watching me having to go through life this way. To be generous to your family, I am wondering if they are experiencing similar pain, but reacting with anger because they feel so helpless. That happens sometimes :-/

      Hang in there. You’re not alone.

  • So very well written! I’ve had RA for 26+ years, adding fibromyalgia 12 years ago, and most recently diagnosed with sjogren’s. Auto-immune diseases suck ass! The best way I have described it to friends and family is that some days it’s takes everything in me to just simply exist. Keep putting the good word out there, and wishing you pain free days!

    • Hey Terri,

      Keep on existing. The world needs people like you to show them what’s possible when you refuse to give up.

      -AG

  • Just found this though Facebook, I’ve started looking up “the arthritis community” again. I was diagnosed at 12 with JIA in my knees and neck and lost my friends through the revelation, kids can be cruel lol I inherited it from my dad but he wasn’t supportive, he feels he earned his from a lifetimes hard work and seemed not to want to share the attention it brings. I was on methotrexate and somehow was blessed that it helped me get back to almost normal, until at 18 my liver was affected. I was taken off all medication and told to go back to a doctor if it “started again” I’m 26 now and I’ve been so unbelievably lucky but the twinges are coming back, this time my hands. I understand this story. I’m scared to tell anyone anything , I’ve kept it all to myself and I’m ok but there was a night of tears that was such sweet relief! Sometimes you just gota let go 🙂

    • Hey Hayley,

      That’s amazing that you got such a long time in remission. If you think things are coming back, I would recommend something like Humira or Kineret. I’ve been on Kineret for something like 10 years, and it’s been *the drug* for me. There are some amazing medicines out there now.

      -Austin

  • Thank you so much Austin!
    It’s so comforting to no I’m not alone in this horrible RA battle. I do feel very lonely, even tho people are all around me. By just reading your post and other comments, it gives me the strength to just keep fighting on. One day at a time, no matter how excruciating my existence is

    Best wishes to you x

    • Hey Teuila,

      Thanks so much for reading. I’m grateful that this blog post and all the commenters gave you strength. That’s a gift to me.

      -AG

  • Hi, Tom: I’m a member of a website devoted to RA and other chronic diseases. It’s funny, but most of us never speak of the “monster who lurks in us” very often at all. Yes, we all have serious diseases, but actually find them boring unless someone is going in for a replacement. Then we gather round and offer support. We also offer support to newbies who are new to the disease process. Thanks for letting me know you are like that, too.

    • Hey Janis,

      If I can be of support to anyone in your group, young men dealing with the disease, please let me know.

      -AG

  • Wow!! This hit home, thank you for being so candid. Living with several auto immune diseases is horrible, I knew for me it was a matter of time and it’s heredity in my family!! Yay for them genes!! While it just sucks at times I plow ahead, partly because I’m stubborn, partly I hate losing to anything but mostly I was a single mom & there was no choice but to get up everyday and do what needed to be done regardless of how I felt. I’m lucky to have met a wonderful man that’s supportive & does as you state “just be there”. Worst thing I’ve ever heard was I didn’t look like I suffer, exactly what does that look like was my response!? Again thank you for putting into words what we feel. Here’s to me on my 42 birthday not ever giving up even when I want to!! The world could use a few more people like you.

    • Erika,

      It sounds like the world could use a lot more people like you, who insist on keeping on day after day. That’s an amazing example to set for your kiddo, who God-willing will break the chain of auto-immune in the genes for good.

      -AG

  • This was an interesting article for me to read. I struggled with chronic illness (Crohn’s disease) for 5 years in my early twenties and spent a lot of time in hospitals, struggling to hold a job due to illness, and hiding at home. I was young and all my peers were healthy, except for me, and I felt utterly unlike everyone I knew. Then, miraculously, in my mid-twenties, I went into remission (not a possibility for many people, I know). For the past eight years I’ve been living a normal, healthy life (except for some mild issues from current & past medications). Your article, for better or worse, really brings me back to that earlier period of my life. I remember what it’s like … wow do I remember. I am terrified of a relapse (common in Crohn’s disease) but also very grateful for each day I have now. Your article makes me think about how I can be a better friend to people who are still struggling (and may always be struggling) with chronic illness.

    • Hey Jennifer, I’m really grateful for your remission. That’s amazing. And you can be there for the people around you.

      -AG

  • Austin you made me cry, this is exactly how I’m feeling today, usually I put on a so called brave face and get on with having RA but yesterday my neurologist told me autoimmune responses are also being triggered in my brain & organs. Sometimes it’s just all too much. The RA, the chemo nausea & other side effects, the knock on conditions, the stupid remarks. Empathy is all that is needed sometimes.

    • Hey Jelly,

      Sometimes I feel like my body is a radio DJ saying “And the hits just keep on coming!” I totally get where you’re coming from.

      Empathy makes all the difference.

      -AG

  • Thank you Gunter…I am lucky and more than grateful for my sweet sister who understands my pain and courage to get up daily via morning phone calls. I have not worked for years, I was a teacher and miss my kids immensely, but do have a support system. No, doctors and meds only mask the shit of RA and PSA and Osteoarthritis. Immune system issues are a bitch, but we must carry on. I did have a good cry reading your story and needed to thank you for sharing. I am not too great at that part. To all of the strong ones out there…KEEP IT UP and NEVER GIVE UP HOPE, LOVE or LAUGHTER even if it is at our own expense…all by ourselves sometimes :)~!!!! I was raised by a Marine and I raised a Marine…they say pain is a state of mind…if only that was true, but I am a pretty good actress when I need to be. Ha, guess I could have gone into show business. Not. Seriously, thank you from the bottom of my heart and all of my aching joints 🙂

  • Thank you i have been dealing with fybro and other heakth issues since 9. Diagnosed at 20 no family support i get so nany connents i dont share anymore what i have with family and freinds i just give a smile while sometimes i am screaming inside

  • Thank you so much for this most. I am a parent of a child with Crohn’s Disease and I feel the same way about how much I share with people, and the reason’s why most of the time it is easier not to. But there are those times when the right person is there a good cry brings some relief.

    • Hey Stacey,

      Thanks for reading and commenting. I know that you and my mother would have a lot to talk about. I know it was a struggle for her when I went from playing football to not being able to walk. Sometimes just getting the emotion out is all we need to pick it back up and keep going.

      I’d recommend trying an elimination diet for you kiddo. I’m finding amazing success with this for my own inflammation, and I know there are countless stories of people with Crohn’s healing themselves via diet.

      -AG

    • Hi Stacy – I am Austin’s mom. It’s incredibly hard to see your child suffer. As parents, we are accustomed to fixing things for our kids. But diseases like these cause us to bump up against the reality that we can’t fix everything. So many feelings….hope for improvement, trusting doctors, being angry with doctors, accepting the medications as treatment, searching for alternative treatments, being disappointed when things don’t work, hopeful when they do.

      Your child will find his/her way in this – as Austin has – with you standing by their side with them. I’m glad Austin’s writing is helping so many people have a good cry. We’ve always had great support from family and friends, but as Austin has said, it’s hard for anyone who is not going through it to really understand. So it’s hard to talk about it. And hard to let the feelings out. God bless you!

  • Hi, Austin.

    I don’t have RA but, I totally relate to you. I was diagnosed with Graves/hyperthyroid Disease and have had it since I was 4, and I’m now 34. Unfortunately, I spent 28 years not knowing why I was falling ill with no infection to be found, why I couldn’t sleep and why I was just withering away as I got older; constantly in and out of the hospital for too many things to even mention. I recently had my thyroid removed in hopes that the most of my symptoms would be relieved but it’s now a roller coaster of symptoms and daily pain. I’m tired of being on pain pills and muscle relaxers because my entire spine, hips, knees and ankles, and all other joints are hurting and I’m having painful muscle spasms. All of the doctors I’ve seen, however, always say they don’t see anything wrong and I get so frustrated! I’m tired of people asking me why I’m always in pain or sick, or why I have an incision on my neck because explaining what’s wrong with me is like trying to teach a full grown, wild lion, how to be “civilized” with humans. I want to cry everyday because it’s bad enough my life already sucks and I’m not where I should be because I’ve lost so many jobs over this and can’t even get along with anyone because they don’t understand.

    Your story however has made me feel a little better, though. That maybe I can do something with my life through all of this. Unfortunately, I don’t have anyone that’s there for me like so many people in here have spoken about.

    Love and light to you and I pray you have less pain throughout your days.

    Thank you.

    • Hey Michelle,

      I keep reading all these comments from folks and I feel an amazing sense of gratitude that I was able to offer some connection to a group of people who, like me, have this part of their lives that really really really isolates them from the rest of the world, and there isn’t much anyone can do about it. There are more medical procedures that can be done. More parts of your body to lose. There are more drugs to be taken. More side effects to be had. Everything is a tradeoff, and we keep trying to find a solution, hoping if we can trade X or Y that we might find some relief, and getting out of bed wouldn’t be such a struggle. Living our lives might not be such a struggle.

      I just want you to know that if you take a look at the rest of these blog comments, there are a lot of other people feeling exactly the same way you are in various degrees. You’re not alone. All this makes me want to bring everyone together somehow to connect everyone in a group where we can nod our heads and say, “yeah, that totally sucks, I’ve been in a similar place.”

      I would encourage you to continue to keep believing that your life has a purpose, because I believe mine does. I don’t for a moment let any experience I’ve had knock me down and keep me from getting back up. I wrote a post about it here: http://www.austingunter.com/2015/12/never-make-excuses/. The jist of the post is, your life may be a struggle, and you may have some limitations, but don’t let that be an excuse for giving it everything that you have. Because everything you have is exactly how much you need to give.

      Let me know if I can do anything for you.
      -AG

  • Very powerful post. But FYI, the flu is caused by a virus, not a bacterium, and thus if you take antibiotics for it you don’t help yourself at all and you do contribute to the epidemic of antibiotic-resistant bacteria that may kill us all.

  • I cannot put my story out in written form. It seems too real, which is too overwhelming for someone who rarely sheds her game face… Thank you for articulating some very basic truths about hidden lives of those of us with chronic illnesses. Many blessings to you.

  • Spot on Austin!!! I don’t think I could have said it better myself. I have RA, fibromyalgia, and also have tested positive for lupus (there seems to be debate from each rheumy as to whether or not I have RA or lupus. If they asked me, I have symptoms from both).
    Thank you so much for your brave article and putting yourself out there. I so related to you! 🙂

  • Really wonderful to find this. I can’t imagine dealing with RA at such a young age. I wasn’t diagnosed until 50, though RA had started eroding my lungs at 40. Such an odd disease. I truly appreciate your sharing this and look forward to reading more.

  • I’ve only been suffering for ten weeks now and its terribly awful and i’ve been a huge baby about it…

    I haven’t been able to do what I want, no one has been able to diagnose me. The pain is awful, I cant sleep at night because of the pain.

    Your story really helped. Thank you.

    I hope you stay in touch with your friend, she is a keeper.

    I have realized in these ten weeks how truly loved I am. I found out, through my whining, how many people really care…and how many people also suffer. Most of them, in silence. I’ve been able to get people to talk to me, so they don’t feel so alone anymore. I’m glad we have each other.

    lots of love to you xoxoxox I appreciate your story very much…

  • Hi, I came across this from Arthritis Care on Facebook and you have explained so perfectly what it’s like to have a chronic illness. I have RA and the way you explained the emotional side of things is exactly me. We try to be strong for so long and then the cracks break and a whole host of emotions stream out. I hope you are in as little pain as possible and have a lovely day. xx

  • Your story resonated with me. I have ME/CFS and also rarely talk about it. Only to my partner and mum (who also has it). You kind of just get used to your new reality and forget that, your (physical) reality is actually nowhere NEAR how normal is and should feel like. But cauae you’ve been chronically unwell for so long, the memory of ‘normal’ disappears. And when that happens, you start beating yourself up for being ‘lazy’ and not being able to do half of what other people your own age can do.

    So I empathise strongly with you. Thanks for your story and keep your chin up and keep writing.

  • Austin:

    Thank your for “WHY I RARELY TALK ABOUT HAVING A CHRONIC ILLNESS”.

    I appreciate your openess and honesty. I too live with chronic illness to include heart and kidney disease and fatigue.

    My non-fiction writing has helped me express myself in a productive way. Much more to share, however I’ve got to turn in now.

    Thank you again,

    Glen

  • Thank you so much for writing this.

    I’ve added it to the list of bookmarked articles/materials I will draw upon for if and when I have the strength to try and talk about my chronic illness with those in my life. Of course I’ve tried to talk about it, but it didn’t go far.. and now I just stay quiet and stoic. But, one day when I have the emotional strength and energy to give it another shot, I will draw upon great articles like what you have written here.

    Thanks for writing something so clear and eloquent, and something that non-ill people should be able to read and take in and understand. Something that I can forward on to a well meaning yet maybe misguided friend of family member. Giving all of us with chronic illness a stronger voice.. because I usually lose mine when I go to talk about my experience with chronic illness.

    Peace, and all the best to you amid the struggle.

  • Austin, great article! I knew a little about RA but I was not aware that people can develop it at young ages. When I got out of the Army and was diagnosed with PTSD and “Gulf War Syndrome”. I have Fibromyalgia, Psoriatic Disease and Diabetes. People don’t understand how exhausting everyday can be. My mind and my heart want to get out on the basketball court with my daughter and my body says no way lady! Your article reminds me to be gentle to myself, make time for that one friend who REALLY is empathetic and keep taking one day at a time.

  • I know this post isn’t about treatments, and that you’ve tried a gazillion things, but I’ve recently come across a drug that is not well-known and has reportedly been of great help to some people with auto-immune diseases such as RA and Crohn’s. It’s called Low-Dose Naltrexone (LDN) and it functions quite differently from other drugs. Just passing on the info in case you haven’t heard of it: http://www.lowdosenaltrexone.org, http://www.ldnresearchtrust.org.

  • Thank you for sharing. I understand more than I care to admit (with my own chronic illness, ankylosing spondylitis) or share with the outside world. There is such peace and understanding in reading a fellow suffers feelings. We are not alone in the grande scheme of the world, but sometimes it feels very lonely in a small world filled with healthy loved ones. I just appreciate your honesty and vulnerability and never give up attitude.

  • Thanks for sharing your story… it brought tears, and that welling up of sadness and loss that I’ve been dealing with the last four years. Not that there aren’t good things, but sometimes I mourn the loss of what I had and what could have been to come. It is such an isolating condition (any chronic illness). I have chronic kidney disease, ankylosing spondylitis and fibromyalgia. Hugs

  • Thank you brave one for sharing your story. You have a community of others who “get it” and are here to support you. So glad you are reaching out, sharing and inspiring us.
    Ive recently been doing the same and have found it healing.
    If you need a new friend, Im here.
    Lots of love, Nikki

  • Thank you for a great article Austin. I try to read something on chronic illness every day and this was well written and helpful. I’ve had ME/CFS for 7 years and it’s been a mentally and physically difficult experience. I’m actually (a lot) happier as a person than before I became ill, I think because a health crisis forces you to do a lot of inner work I suppose. Recently, a worsening of symptoms has put me into a “hold it together” mode for many months. I allow myself a little grieving or emotional expression and then, as you said, “pick up (my) baggage back up and start walking again.” It’s an interesting journey to have a condition that is so arduous, and I am also incredibly grateful to be as functioning as I am. There are days I can’t really leave the house, but there are also days that I can work for a few hours outside the house. It’s not quite as simple or fun as the life I had a few years ago, but it’s also better than the year or two that I couldn’t get out of bed.

  • Thank you so much for sharing this. I’ve not heard anyone share this side of things before. I’ve experienced CFS for 17 years now and really relate to what you have written. With a lot of hard work and maybe too much will I had years of low to moderate functioning but then years being bed ridden and house bound. The physical pain and isolation has been painful and challenging but the emotional/psychological pain and isolation have been as challenging if not more so at times. I find it weird/difficult/isolating not being completely honest about how I am and why or why not I’m doing/not doing something but then the alternative of explaining/not being believed/not being understood/being looked down on/rejected (especially by loved ones)is so much more painful and isolating. I brush over answers now too and avoid explanations as much as possible.
    I’ve recently bought the book – Secrets Behind Chronic and Mystery Illness and How to Finally Heal by Anthony William. Maybe you would find it helpful, there’s a chapter on RA. I haven’t put it to use yet so can’t comment but he apparently has an excellent record of helping loads of people to heal. You never know his protocol might be ‘the one’ for us.
    Its a relief and a sadness to know others are sharing similar experiences

  • From my experience with chronic pain, I think it’s usually more common to break down and cry when we feel genuine empathy and concern from someone else. It’s probably because so often we deny ourselves to be empathetic towards our own pain – we try and shush it, as you said sometimes you need to stop thinking about it if you want to keep going. To see yourself through the gentle eyes of someone else can be crushing, and eventually relieving. Achieving a balance in how we perceive ourselves is so hard — but very needed.

    Hope you have low pain days,
    s

  • Thank you Austin for that wonderful share, I feel I know you so much better now.
    Geoff

  • After reading your piece, I cried and cried. I’m been suffering with R.A for 16 yrs. my family loves me and tries to be supportive. I love them for that. But at times I feel very alone and I feel that in the future I will be a burden to my family. I try to be strong. I go to work everyday. Especially when I’m in pain. I won’t let this beat me. At times, I break down in silence. Thank you for making me feel that I’m not alone.

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