I complain too much? No, I’m restrained when it comes to my illness

I’ve never had someone come out and say that I complain too much to my face as such. However I get the distinct impression that some people think that I do talk about my illness too much.

It’s actually terrible that these poor, healthy people around me have to listen to so much of my belly-aching right?

Here’s the thing though, the people around me probably only hear about 10% of the difficulty I that I go through and internalise. How awful for them to be so worn-down and exhausted by my occasional complaints about chronic pain. I literally cannot imagine how difficult that must be.

I’m being sarcastic of course, but the point stands.

I look normal, because I fight to be normal

Normally when I tell someone that I am chronically ill and have incurable pain they look at me a little dumbfounded. Mainly because I look normal. I’m not sure how someone in the worst throws of pain is meant to look, and I’m sure I look like their dictionary definition of pain from time to time.

Truthfully though, most of the time I’m in pain, (as mad as this sounds to anyone else). I look like a regular human being. I might have a wry smile on my face, I could be belly-laughing in the sunshine. Doesn’t mean that I am not in pain. Just means that years of being in pain hides the telltale signs from most of the people around me.

When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak. – Audre Lorde

Each day I practice my careful maintenance in not giving away how much pain I’m really in. Hiding the pain a little relaxes those around me, so they relax around me, treat me normally and I feel a little bit better in turn. I save the moments where I have to say something about my pain or ask for help for the really worst moments of pain and discomfort, when no amount of coy behaviour will keep my painful secret hidden.

Illness gives me great resolve – so don’t test me

So I find it a little insulting when people imply that I or anyone else complains too much about pain. Most of us who are chronically ill work very hard to ignore or look away from our pain when it continues to try and rile and upset us. We fight every single hour of every single day to claw back a little normality in our lives around how we are perceived or treated.

So to that end, I feel very little guilt when it comes to talking or sharing my experience of living with pain, and if anyone has a problem with my immense restraint when it comes to coping with my lot, then that says more about them then it says about me.

While most inconveniences are passing for those around us, we rarely get a break from our pain and all the baggage it brings. So the least someone else can do is listen when we share the details of our difficulty. It’s our burden to bear, but for the most part we manage it with enormous patience and great dignity.

And that’s before life gets in the way too

When I recently went out for what was to become a four hour group bike ride in the midday sun. We stopped for a break in the shade and someone else who was struggling with the heat a bit more than I asked me; “Aren’t you hot? You don’t look hot at all.”

Well of course I was hot, I was feeling a great many things at that time. I was hot, I was in a great deal of pain and I was very tired. The difference was I wasn’t throwing my arms up in the air and getting flustered about it, I was just getting on with the ride. I think that’s a great metaphor for how we cope with illness.

When someone else is ill, they’re not accustomed to it, so they get flustered and frustrated and complain openly. We’re so used to being beleaguered with pain we don’t even bother to tell anyone about it most of the time, it’s just our default setting. Now, that doesn’t make it easy for us, but it does make it a new sort of normal.

So we manage with daily pain, and we manage all the other problems and issues that life throws at us on top of that too – all the things that a healthy person would feel ripe to open their mouths about. Only difference is a chronically ill person will listen and empathise – almost always – despite how much worse they are feeling.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

12 responses to “I complain too much? No, I’m restrained when it comes to my illness

  1. I feel as though people think the same thing when after they’ve asked me how I am and I vent how I really feel that day, instead of just staying the standard ‘good thanks’ response, they wish that they hadn’t of asked. This often keeps me from telling many people how I really feel, but some people need to be able to hear about it because otherwise I would be bottled with a lot of emotion and pain. Talking about our problems is one of the only things we have to make us feel better and as though people can understand and hopefully help us.

  2. Elly

    Thanks so much for this. As I read it, I thought, this is me. I’m in pain all of the time and I too tend to say “fine thanks” when asked. I often get the feeling that is just a courtesy that people are asking how you are, the don’t really want to know. In fact, as I was reading your post, I was thinking how else would we live? I’m not going to give up my life and curl into a ball because of chronic pain. I have adjusted to life with daily pain as a normal way to live. When I’m worn out from a bad day and irritable from smiling and pretending that I’m just peachy, thank you very much, l go home and take my narcotic pain meds, nothing else helps, and plan to stay in the house for the rest of the day. I will go on vacations, out for meals and with friends because without all of that, I would wallow in self pity because I have this awful disease.
    Thank you again for sharing, it helps to know I’m not alone.

  3. juliasarahelizabeth

    I couldn’t agree with you more. I got that feeling from a few friends recently and it was really discouraging. Between my recent diagnosis for Rheumatoid Arthritis and those off handed comments, i have been extrememly hesitant when i write. I have been posting stuff, but it has become less personal and more varied in topics. I am not sure if this is good or bad, but with so much change going on in my life i doneed time to process it before i can explain it to others. One person told me, “When every blog is about your health, well ppl do get tired of it.” I am in bed in pain. My only venture out of the house is to dr appts. What else do you want me to write about? My non-exsistent relationship with Winnie the Pooh?

  4. This captures a feeling that’s very difficult to explain or even process in our own minds. I find myself flying off the handle whenever anyone around me complains about any sort of illness, then later wonder why that made me so mad. Don’t I do the same thing? It’s because they’re not sick all the time. But it’s hard to work that out and it’s still not a very healthy reflex lol.

    • The exact same thing happens to me. I find this very hard. Especially when someone else with a temporary illness gets lavished with attention when I am quietly struggling! So I can certainly relate there. I’m about to write about better ways that those around us can help us when we’re finding things hard, hopefully you’ll agree or provide some other suggestions.

  5. Danel

    I agree with everything that is said here. I have been living with chronic pain since 1989. Multiple trauma on right foot, leg , TKR, skin grafts, hip , right shoulder and on top of that a debilitating life threatening disease that causes numerous other health problems. All from being a passenger on a motorcycle.
    A brief synopsis of my condition. 50 surgeries to date my friends and family have heard many complaints of pain and suffering from me. They have seen first hand my surgeries or driven me to and from the hospital many times ,God bless them. They are sick of it I can tell but they put up with me. Like many said above I also restrain from telling everything I am suffering from.
    Life has normal pains for a healthy person. When you become sick or disabled you have that as well as your NEW pains on top of it all, compounding everything. My coping skills are well tried over time and tested everyday.
    I almost cannot have a conversation with someone without, how are you or how is your health and I just get that feeling in my gut like ohh here we go. Maybe they are being nice or it is a reflex question
    So I keep it light and shrug off mainly what I am dealing with giving the short answer , “I have my ups and downs but staying positive.” One time I had a disagreement with a close friend and it was actually used against me. ” I have had to listen to all your complaining all these years and I am sick of hearing it” Ya know that really hurt.Ha. Since then I have really tried to keep a lid on my suffering. Giving it to God is all I can do,
    My hats off to the nurses and Doctors who daily hear complaints from patients. I am considered by many to be a really good patient when I am in the hospital. Almost numb to it sometimes.
    Yes we must be highly skilled in being patient with healthy people because how could they understand the scope and magnitude of a disabled or seriously ill person. I also look fairly healthy and folks cannot grasp that I am ill or disabled. It is really hard to deal with as you all have said. We are part of a special club and can comfort each other in our understanding. Hang in there as best you can and keep faith in the one who heals all. Looking forward to his return. God Bless everyone and may your pain and suffering abate even for a little while.
    Fellow sufferer

    • Couldn’t have put it better myself, thank you so much for leaving this comment.

      • Danel

        endohope,

        Thank you for posting your story. You inspired me to share. I consider my illness as an awakening of sorts.. Crazy as it sounds but it opened my eyes to a whole other side of life I would not have otherwise not seen.
        Making me more understanding and compassionate to others. Hope your feeling better and stay strong.
        Thanks again for sharing your story with the world.
        D

      • You’re most welcome 🙂

  6. Becky

    I wouldnt wish this on no one ever…. but some times I wish they could just feel this never stopping pain I have every min, day and nite. Im having to learn not to complain to family, and others around me. I need to learn to keep it inside me. Been yrssssss dealing with this, and I know it gets old for everyone to hear it. So gonna put a smile on my face, and act like nothing is wrong. have my melt downs when its just me and my cats.

  7. Beth

    I totally get all of your comments and this is exactly what I do say ‘Yeah I’m ok’ when inside I feel like I’m dying. I’ve just had a really bad week came off Microgynon as the pain seemed so much worse on it then been bleeding so heavily for a ten days. Now I’ve had diahorrea for days and agonising cramps. I couldn’t help but burst into tears to my mum and say how fed up I am and I don’t know what to do anymore. She was initially supportive then two hours later sat looking at me with a face like thunder and said she’s fed up of all this I keep bringing to her door and walking around like a half dead drip. My son has an ASD and she said I’m not helping him being like this. I never normally moan and just plod along trying to get on with life and be normal. Now I feel like I’ve got nobody that understands and being called a drama queen for having a cry doesn’t seem fair. How can I make my mother understand? I just feel rubbish and I don’t want to do without her support.
    Sorry for the rant, just feeling hurt I suppose x

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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