Invisible Illness, Invisible Friends?

Invisible Illness, Invisible Friends?

If you have RA or a similar chronic illness, such as fibromyalgia, lupus, Crohn’s disease, diabetes, and the list goes on and on — you’ve probably heard the term “invisible illness” thrown about more than once. I’m happy to say that my RA is invisible, physically, for the most part. You can’t really tell that I have a painful chronic disease unless you look really close and catch me limping a bit sometimes, notice my puffy right ankle, or see the scars on my wrist from a synovectomy surgery years ago. But some people aren’t so lucky and they’re forced to deal with the physical and emotional stresses of being out in the world with disfigured hands, steroid-induced moon-shaped faces, surgery scars, joint deformities, braces, walkers, canes and even wheelchairs. Thankfully with advancements in medicine and more effective RA treatments becoming available, patients are better able to get their disease under control and avoid physical damage and deformities.

So that’s great news, right? Yes! But at the same time it makes it more challenging for everyone in the “outside world” or “the able bodies” (as my friend Mara calls people who don’t have RA or chronic pain) to understand that you still have a painful disease. How many times have you heard people tell you that “you don’t look that sick” or “you look normal?” Or maybe they don’t specifically say those words but their actions and perhaps other, equally offensive comments, let you know that they really have no understanding of what you go through living with pain every day. It must be nice to not work full-time. What do you DO all day? But of course your family and close friends wouldn’t fall into the same category of these misinformed, misunderstood, judgmental and sometimes insensitive people who make up the general public, right? Wrong. The people who are closest to you often have the least clue of what’s really going on, and what it’s like to live with RA. And they can be some of your harshest critics.

I’m not working a “normal” full-time job right now, which really bugs a lot of people — especially my family members. I’ve recently been substitute teaching as a special education para at different elementary and high schools while trying to supplement my hours and income with freelance writing and photography jobs when I can handle it.  Despite this work (which is not the typical office job with benefits), I often get the feeling that many family members and friends think I’m just being lazy, unmotivated, and that I don’t care that I’m not a fully contributing member of society (whatever that’s supposed to mean). I have worked many different traditional office jobs in the past, but usually temp jobs, because I physically can handle working that schedule for only so long before my body gives out and I need to rest. Jobs that have more flexible hours and flexibility in general just work a lot better for me.

To a healthy able-bodied person, this probably sounds like I am lazy and I just don’t want to work. That’s hardly the truth. I want more than anything to be able to live and work like other people do, as a productive and independent person. The reality is that I have significant physical pain on a daily basis; I have not had a pain-free day since 1997. That can make working a bit tough sometimes, never mind the other symptoms that often accompany RA: extreme fatigue, anxiety, depression, headaches, stomach issues, etc. I’m not lazy. I just don’t feel well 90-99% of the time.

Dealing with these “invisible illness” issues with my family and some friends has been frustrating over the years, and it’s something that I constantly struggle with — feeling guilty and like I’m not doing as much as I should or could be doing in life. My family’s expectations and sometimes lack of understanding isn’t what prompted me to write this post today, though. It was a rather shocking conversation I had with a good friend who accused me of using my chronic pain as an excuse.

The conversation I had with her left me deeply depressed, angry, and in tears. It was the first time anybody has said those words to me, those accusations. Although I’m guessing that plenty of people have thought them or have said them behind my back over the years. And I kind of see where they’re coming from. To some, I probably look like I’m a lazy slacker, coasting through life, letting my parents help me out with my health insurance and other financial burdens. But the truth is that I hate it that I can’t afford my health care on my own at this point in time. And I spend a lot of time worrying and beating myself up about it already, so I don’t really need anybody else contributing to my own self-loathing. I doesn’t help. Believe me, I have enough anxieties and say enough harsh things to myself, feeling guilty that I’m not doing enough. That I’m not working enough or trying hard enough, or living a better, more productive life. I am my own worst critic.

Life is a difficult, confusing, messy struggle for everyone. And it is especially so when you live every day with some degree of pain — sometimes manageable, and sometimes unbearable. In no way do I ever want to use my RA as an excuse in life. Nor do I want pity from others. The thought of that sickens me. And the thought that family or friends would think that I use my RA as an excuse, despite that I know better and I know the truth of what I’m dealing with, is also hard to take. But on the flip side, this makes me grateful and value the people in my life who are understanding and kind and truly supportive. And it makes me want to reach out and be empathetic to others who might be dealing with similar things. Everyone is struggling with something in life and I think we all just need to be a little bit nicer to each other.

My friend Mara, who also has RA, was supportive when I told her about what happened with my friend. I’m so thankful that she understands exactly this dilemma or “Catch-22” we face having an invisible illness like RA.

“It’s this double-edged sword where we have to come across as being okay, even when we are seriously suffering, just to be able to function in an ableist society,” Mara said. “But then if we actually abide by what our bodies want we are called lazy. We have to “fake it to make it” in a very real sense.”

As of now, I still haven’t spoken with the friend who accused me of using my chronic pain as an excuse. I honestly think that I deserve some sort of an apology from her, but in her stubborn mind she thinks she’s absolutely right in the comments she said to me and she wasn’t willing to try to understand anything I was communicating to her. I don’t think I’m a perfect person or have the right views or opinions by any means. I guess I’m not sure what to do right now. How do you try to explain what it’s really like living with a disease like RA? How do you make people understand, even after you’ve already told them about it? That seems to be the main challenge when living with an invisible illness.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (18)
  • retiredbutton
    2 years ago

    I have a best friend that now calls me her ‘sister’. I guess that puts me in a different kind of category that isn’t in need of hanging out all the time. She use to be a friend that I would do everything with. Neither of us were married for years. We ran around and did everything fun that single girls do. The years have marched on and now we are both married. She is healthy and runs around with her husband while I stay at home with mine. I am lucky to have my husband who ‘gets’ it. My friend has accused me more than once that I am not that sick and I am just trying to get out of doing things. I called her yesterday to wish her a happy birthday, and she informed me about a party some of her ‘friends’ are giving her. What friends? We know all the same people–maybe. Much time has gone by since I got sick 12 years ago, now she has moved on to other friends and other things. People who are friends have things and interests in common. Do I really have to have only RA friends? Really? No offense to anyone here, just saying… I’m having a really hard time with my social life. I have recently retired, my mom died only a few months ago with very little warning, and I’m in the middle of a bad flare that is making me ‘grunt’ with every move. Oh well! Hard to deal with it, but there are very few moments I feel good. I wish I had my life back, but what good would that do? I use to teach P.E., I use to spend my weekends golfing and hiking. I use to live normally. I have had to redefine myself. I now read, do genealogy, walk my dogs (sometimes), live on the internet, etc., etc. The only good that has come from this is I have found retirement okay. Going to work and feeling like I have the flu all the time couldn’t have been worse. I guess now, I have to rediscover who I am and get some new friends! Life is hard for everyone sometimes, but with RA that sometimes seems like ALL the time.

  • Elizabeth Riggs
    4 years ago

    I was once told that if people didn’t “understand,” it was my own fault – that I need to tell people what it is like and how bad I feel and yada yada yada. To which I reply, “When I do tell people, they think I’m whining, they think I’m just a complainer. They don’t believe it is as bad as it really is. So why waste my time telling people about it.”

    And that’s the way it is. Our fault if we tell people, our fault if we don’t tell people.

    Excuse me. I’m going to curl up with the ONE person in this world who really knows, understands and forgives my disabilities: my wonderful husband.

  • Connie Hansen
    4 years ago

    For me, it is so important to trust yourself !! If YOU do not feel “right”, then you are NOT “right”. NEVER give up on finding “the” Physician and Surgeons that will be educated enough to find what is going on. TRUST what your body is telling. Seek and find others that are suffering with this disease to help you have the confidence, trust, and self-worth to seek a solution. I know a lot of people with RA, but I don’t know very many that do anything about it. Love to all … and don’t give up … 🙂

  • Damian
    5 years ago

    Hi to all, great article! Looking at the people who have replied it looks like I’m the only male…..A large part of my 20 yrs living with RA & the ‘Invisible Illness’ is that us ‘Men’ or as I see them ‘boys’ 🙂 can’t show pain, can’t show weakness, geeze most can’t show emotions. You know those big grid iron players or those big ice hockey players well I was one of them…Aussie rules (AFL) look it up 🙂 I was the crazy, wild type who would tackle a freight train, who would smash through a brick wall. I was seen by many as a man who cuts trees down with his hands and bends steel with his teeth…..
    1994 I woke with 2 ‘broken ankles’ then a week later 2 broken wrists, then a month later diagnosed with RA. I have almost no friends but have a loving family (thank God). The community still don’t understand….
    Anyway as I’ve said before we need George Clooney and Rhianna to get RA and tell the world what it is and what it does 🙂

    Have a great day to all

    Damian

  • Kellie
    5 years ago

    My husband is always wanting me to get a job. I can’t as I wouldn’t be able to actually function there. I am on disability so I do have some money coming in. I had 5 years of pain every day even when I wasn’t in a flare. I also have a lot less strength in my hands than I used to.
    I recently started Enbrel, which is working well for me. The pain is much less but the loss of strength is the same. I was on the wait staff in fine dining restaurants before this all started. Can’t do that even if I look like there is nothing wrong with me. Wish they could feel the pain for just one day. I think Stephen King described it well in one of his books. It’s like broken glass grinding in your joints. I used to be able to feel the heat coming from my knees. I am much better, but certainly not pain free. I wish I was!!!
    I have actually had someone else say something stupid to me. A lady that has a child at the gym with my daughter made a remark about how the people who REALLY need it don’t get disability. The point was pretty obvious to me. It hurt, but not as much as it would have if a friend had said it.

  • jaide winn
    5 years ago

    This is a great article and very well written. We all have had situations like this. I had one recently, but it was not as cruel. I was talking with a friend who I haven’t talked with since October. She is having lots of changes in her life – divorce, new job, new home, etc. She knows about all of my health issues, but she never discusses them (it is like she just wants to ignore them). Plus, I have had foot surgery for plantar fasciitis and am not able to put any weight on my foot for 6 weeks; I can’t even get out of my own house without someone helping me. And, as we are talking, she never ask me how I am doing regarding my chronic illnesses or my surgery, but she casually says, “you will have to come see my new duplex, I would love for you to come over”. I realized at that moment, she has no clue and doesn’t want to have a clue. I hate to say, but that 10 year friendship just ended, right there on the phone. Oh, I would love to go visit her, if I could! Angela, your friend will never understand, unless the same happens to her and she has to go through what we go through everyday. It amazes me how people can be so judgmental. Until you have walked a day in my footsteps, don’t judge me or make ridiculous comments. I promise, if they walked one day in our footsteps, they would be so ready to go back to their own life.

  • Susan fenner
    5 years ago

    You need to cut those people out of your life immediately! Anyone who says that to you has no idea what you go through every day. Your true friends and family can see in your eyes without saying a word you’re having a bad day. I constantly struggle with letting people down because I have to cancel at the last minute due to not feeling well. I’m still working on this, but hang in there! Every day you get up is a success even if you have to take 3 naps that day.

  • Christy D
    5 years ago

    I just wanted to say thank you for this article. It was like you were writing about me in many ways. Even though it is sad that so many of us experience this treatment from those closest to us, it helps to know that I’m not alone in my experiences and how they make me feel. I guess it helps to make me feel a little bit ‘normal’ to be feeling the same things as someone else. I don’t have that feeling very often in my every day life. Thanks again.

  • Angela Lundberg author
    5 years ago

    Thank you for your comment, Christy! I’m sorry to hear that you’ve experienced similar things in your life like what I wrote about. But you’re right, you’re not alone. I think this is a big issue that most people don’t know about or understand. Whether you’re the patient with the chronic pain or the caregiver/parent/friend/relative, it can be really difficult to communicate sometimes. We need better communication! So thank YOU for taking the time to read my post and to comment on it. I hope you feel better soon!

  • Teresa
    5 years ago

    People continue to surprise me. It’s funny how you’ll say you’re tired and others are exhuasted. I sometimes feel if you are not living with chronic disease, such as this, you really have no clue. I work two jobs, sometimes three, just to make ends meet, but my hands sometimes don’t work and I cannot do my second or third jobs well. I’ve noticed I have to have that “down” day once a week, where I basically sit and do nothing for my body to recover from the 12-15 hours days I work, and my second job is an “on the feet constantly” type of job. Hard to rest when you are moving 24/7. No one in my life even attempts to understand any of this. They look at my “off work days” as days I want to spend running around…Nope, my off days I just want to rest and catch up with housework.

    I will pray that your hands work to at least hold an umbrella…those rainy cold days are certainly the worst. “Invisible RA friends” if we don’t support each other, who will??? Hugs to you my friend!

  • retiredbutton
    2 years ago

    They have NO idea.

  • Susan fenner
    5 years ago

    Well said!

  • Angela Lundberg author
    5 years ago

    Hi Teresa, sorry it took me so long to reply! Thank you very much for your comment. Wow I can’t believe you work more than one job and one where you’re on your feet. That’s difficult for a healthy person, never mind someone with RA. You’re right, we need to support each other, especially since many of the people who are supposed to be supportive in our lives can’t really understand what we deal with having the disease. Thank you for reading and for your support. Hugs back at you! 🙂

  • Teresa Turner
    5 years ago

    I have had a diagnosis for 3 years now. My RA affects my hands, knees, ankles and causes dry eyes. My kids 25 and 21 don’t really get it either. I’ve not had a pain free days for years. Just the ache and burning brings about depression and lack of energy. I am trying to obtain disability due to pain and loss of concentration. I used to thrive on multi-tasking at work. Now I can only work on one thing at a time and even then become frustrated because I can’t finish. I am 52 and never thought I would be disabled. I want to work. Currently my ADA protection of my job and benefits ends Oct 26th. I haven’t gotten paid in 3 months and the bills are piling up. So not only do fight the pain but I am fighting the feelings of adding so much financial burden to my family. It’s so difficult but I can’t “fix it”.

  • Nancy McHugh
    5 years ago

    I am constantly fighting with my husband and his comments to me, “you just can’t be that tired. You look fine.” Or my bosses, when I was first diagnosed a year and a half ago, and my knees were so swollen I couldn’t walk and had to use crutches, “oh well, you can just take a pill, right?” It is a frustrating and painful disease. That “friend” who said those terrible things to you is no friend. Cut her loose. You don’t need her in your life. Hang in there!

  • Lily
    5 years ago

    I perfectly understand the feeling because I’ve been called lazy too. I notice the expression on people’s faces when I park on the handicap space or when I take my Medicare card to buy a train ticket. With my children it hasn’t been easy either. Even though they are grownups sometimes they don’t understand that i’m always tired and I just want to take it slow. My sister got into an argument with a friend of hers because she was questioning her on why she was always doing things for me when i’m way younger than her. On the other side I have a dear friend that always tells me to use my cane that’s in the trunk of my car to help me feel more stable and also in that way people will not wonder what’s wrong with me. Living with RA it’s a struggle everyday.

  • Pat
    5 years ago

    I think these very comments of saying I was lazy, was the driving force behind me pushing myself to appear “normal” for so many years, prior to my diagnosis. My earliest signs of RA were at age 10 and living on a farm. Having to hoe the garden in the sun physically exhausted me. In my 20’s after work I would be so tired I’d sleep rather than eat. Raising 2 children was an extreme challenge yet I pushed forward. I went back to college for another degree and the pain of writing and typing forced me to keep hot water bottles with me to stop the cramping in my hands. I was frustrated with my doctor because he dismissed my pain. After age 57, I found a doctor who knew where I was coming from and for the first time I got treatment and had a diagnosis. It was heaven sent, I thought to now have a reason for the symptoms still I get the pat comments about it just being arthritis. By age 60 my first attempt at disability was granted because of the advanced stage of the RA. My life is much different now that I am retirement aged and can set my own schedule and pace. But looking back I believe that if I had had a diagnosis would I have given in and never forged through the pain and stiffness to accomplish all that I did?

  • Ann
    4 years ago

    I’ve always liked the saying “what other people think of me is none of my business”. Although it can sound a little arrogant, it is really meant to keep us focussed on the things we can manage and change, that is usually only ourselves. That comment from your friend must have really stung. But people are ignorant of all kinds of situations and I know I have been just as thoughtless and ignorant as the next person regarding some. I have a recent DX of RA, but have had chronic fatigue syndrome (CFS) for 2 years now (following infectious mono). If you think people think badly of RA, you should have CFS. I’ve been told it’s all in my head, I should do more exercise, etc, and I’ve lost 3 jobs. The first job because they said they couldn’t vary the hours for me, the second because I had a CFS crash (like a flare) and the job I just had because I developed RA and got sore and ill and MORE fatigued. For the most part I feel that a lot of people don’t believe me. They see contradictions in my actions “If she’s so tired, why is she laughing”, or they compare themselves “yes, I think I have CFS, I’m so tired all the time”. The fact that I raised 2 children and worked previously and was also tired in that “I need a holiday” way and therefore I know the difference between worn out and CFS doesn’t enter people’s heads. In fact I realised a lot about me and my illnesses are of little or no concern to most people and have tried to utilise this instead of fighting it all the time. For example, I just get on with things in my own way that suits my health without a word and only explain if someone asks. I find it’s easier to be assertive when people are indifferent, they go along with what you say. I have a friend who says “just smile” when it’s not going our way or people are rude. It’s very effective. So we get back to the idea that “what other people think of me is none of my business”. It’s not, even when it hurts. What we can do is move forward, just smile and hope they get it one day.

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