Oldies, but Goodies-An Open Letter from Someone with Chronic Illness, To Friends, Family…and Strangers

In the next two weeks, you may see some blogs you may have read before-but we think they’re really important to share with the Mid Atlantic Region and anyone else who may be reading Wellness with a Side of Life, Please-because you can probably relate.  So sit back and enjoy with us, some oldies, but goodies from Ashley Boynes.

Keep Moving,

Lisa Mauti

Hello:
I’m going to share with you all an “open letter” that I wrote. It’s from me, to all of you – friends, family, loved ones, strangers, readers, social media pals, etc – but it’s not JUST from me. It’s on behalf of all “sufferers” (or, better yet – “survivors” and “getting-by-ers”) of chronic illnesses like arthritis and other autoimmune/chronic pain conditions, to the rest of the world.

I live with a chronic illness and an invisible disability. You might not know it, because I make do, and I smile while I’m at it.

It’s what I have to do. Because, let me tell you, there are days when the smiles are forced, and veiling a heart made heavy due to tears.

And so, I write you this letter, begging everyone to understand – not just for me – but for the MILLIONS of people out there who DON’T have a “voice” or a platform to express themselves like I do. Or, maybe they are too shy, or too “proud” – well, I’m not. I’m honest, I’m not ashamed – I didn’t bring this upon myself and I’m not guilty. So I’m going to write you all a letter and tell you all my story – on behalf of us all …..

Dear Reader,

I am a person living with chronic illness. I’m your neighbor, your friend, your co-worker, maybe your classmate.

I probably don’t “look” sick, and you probably don’t understand why I “get special treatment.”

At first, you were probably sympathetic to my always being injured, or ill. Now, you’re probably quite sick of it, and thinking I’m full of excuses. Do you think it’s “all in my head?” Do you think I use my health to get out of doing things? Do you think I’m lazy or whiny? Want attention or pity? Do you think I’m just depressed or anxious?

If you think that, think again. I’m sure that there are people like that, but most of us wish we had it any other way and we are just doing the best we can to cope with what we were given.

Let me introduce you to myself , or, re-introduce you to myself…and to millions like me.

We’re the people you work with who call off or come in late “all the time” for seemingly “no reason” and who seem to have an endless stream of doctor’s appointments and hospital visits because……well, we do! We’re the “go-getters” who are trapped in sick and disabled bodies. People who are frustrated because our life goals and careers may not work out the way we wanted them to because we got sidetracked due to unforeseen illnesses with unpredictable outcomes. Try to remember that maybe we don’t “want” to have to take days off or work less hours or resort to certain choices regarding employment circumstances in life. It may help put things into perspective for you.

We’re the friend who always makes plans with you but then, yes, sometimes cancels last-minute because we’re not feeling well, and the nature of most of these autoimmune illnesses is totally unpredictable and can change from day to day or even hour to hour. Yes, we are aware that it probably begins to sound like an “excuse.” We’re the person who you altogether STOP asking to hang out because you “assume” we won’t be able to. Eventually, you’ll stop even caring enough to want to keep in touch. Maybe you get sick of hearing about us talk about our health, even though it is a huge part of our life, and we listen to you talk about much LESS serious parts of your life. And that’s fine. Our trials make us stronger, and when YOU, God forbid, are faced with serious health situations someday, hopefully far, far down the road, we’ll be ready and able, and equipped to handle it when you need US to lean on in the future. Just remember that we’re still the same person as we were before. Though our health is a huge part of who we are, we still have the same interests as we did before, and are still the same person – ill health didn’t rob us of our personality or our soul. Just because we aren’t able to do all of the same things that we were before does not mean that we got robbed of the ability to be a good friend. In fact, just the opposite, I think. I know that adversity shows you who your true friends are. Sadly, I’ve had many abandon me, or, at least I feel that way….people who’ve left me when I’ve needed them most … and, also, people who’ve came to my side when I’ve needed them most!

We’re the family member or loved one who might seem distant or moody from time-to-time. Well, no wonder. Fatigue and constant sickness and pain will do that to a person. Then there’s the “what if.” What if I didn’t have this chronic illness in my life? Always try to remember that, whether we disclose it or not, a lot of us have had to give up a lot of things due to our sicknesses and disabilities, whether we talk about it or not….everything from careers, to friendships, to relationships, to our looks, money, sometimes an education – who knows! Aside from their health, you don’t know what a person has lost because of their chronic illness.

For me, aside from giving up many foods, and losing some friends since I became even more ill, I’ve lost my self-esteem. I have lost the body that I once loved (due to weight-gain from meds and lack of exercise) and my self-esteem right along with it. Until I get my knee fixed and arthritis under control to do the types of exercises I need to do,  and until I can find foods that literally don’t make me sick, I may not get that back for awhile…and that sounds silly and vain, but it is VERY difficult! (Most people think I’m nuts but…again…until you’re in someone’s shoes you JUST don’t know!)

I was also going to go into teaching. Many people do not know this. I was half way through graduate school and left the program because I realized I’d never, ever be able to teach with all of my autoimmune issues, health problems piling up, and my inability to “do” mornings.

It’d be easy to get depressed about these things but I do not. Many people do, but, many of us do not. But that’s why I write this letter on behalf of us all -  it’s to let all of you know that you should not simply assume things about people with chronic illness. It’s too easy to assume that “just because” someone is sick all the time, or tired all of the time, or dealing with these issues all of the time, that they are “just depressed”. Don’t assume that.

Don’t assume that they don’t “want” to work. Don’t assume that they don’t “want” to help out more around the house. Don’t assume that they don’t ‘want” to exercise; don’t “want” to be productive; don’t “want” to be your friend; don’t “want” to hang out.

Don’t assume because someone is fabulous and beautiful, or handsome and athletic, that they aren’t ill. What do looks have to do with illness? If you see a “normal looking” person with a handicapped parking pass, for example … don’t go getting all judgmental. You “never know!”

Don’t assume that because someone IS productive and working, or  because they are exercising and athletic, that they aren’t sick or that they are ‘faking’ – some people are able to do more than others, illness affects every person differently! You still don’t know what type of condition they might be battling.

There are a lot of things that those of us living with chronic illness deal with, and a lot of them are issues that people don’t think about. We get “diagnoses” and “remedies” thrown at us all the time from people who – trust me – are NOT doctors. (Sometimes, it gets amusing, and you have to learn when to filter – other people with chronic ailments HAVE to know what I am talking about – HA HA)

But to all reading this letter, I ask that you take into consideration what your friends, loved ones, and colleagues are dealing with on a DAILY basis. When you start to get annoyed – stop and think about the last time you had the flu for example. Think about having the fluevery single day, because that’s a pretty good comparison, I think. It should make you a little more sensitive, and should make you open your eyes to what “superheroes” people living with – and functioning with – chronic autoimmune illness really are!

Last but not least I must say that I love, value, and appreciate every person in my support system dearly … from my closest friends, family loved ones, and of course my boyfriend, to my online community, thank you all!


10 thoughts on “Oldies, but Goodies-An Open Letter from Someone with Chronic Illness, To Friends, Family…and Strangers

  1. this is such an amazing piece of what it’s really like on the inside to be living with chronic illness. i love the way you express yourself.

    and the assumptions we make about each other is so true.

    the most amazing thing that found me shaking my head was when you said how much we – and i include myself – want to participate and often just can’t, and feel abandoned by others who get sick of us, or find we’re depressed or too much trouble to deal with – when in actuality what is true is that we’re doing the best we can.

    thank you for speaking for so many of us who can’t find the words to express ourselves as clearly as you do.

  2. Fabulous ‘open letter’. That’s exactly how it is. I will show this to some of my relatives to help them understand. Thanks :o)

  3. This is a great open letter. I am 33, married with 3 kids ranging from 2 – 5. Everything in the letter I have either done or can relate to at some point. Love the positive outlook on things though.

    I say that I manage my RA on a daily basis, it does not manage me. The side effects, blood work and weekly shots I wouldn’t wish on anyone. On the plus side, after 6+ years and another year and a half of tinkering w/ med, things seem to be looking up.

    It’s nice to have an online community w/ twitter, blogs and FB that just get it. No explanations necessary.

  4. Hello there,

    I am really sorry – this is my THIRD attempt at leaving a comment lol ! I was on iphone, in bed and in the dark, back on laptop now.
    Congratulations, you said it all for your fellow sufferers. Let’s hope many people get to read it. I do understand though, I have been there when I was fit and well, you know not really stopping to think and jumping to conclusions. It must be very difficult to see a very healthy looking, smiling, well presented person, maybe one day in a wheelchair and the next day walking!
    My favourite that I am eventually learning to deal with is “you’re looking really well though” – I just say thank you xx

  5. Hello, I am a 15 year old who was diagnosed with JRA when I wa 14. I was close to tears when I was reading this to my mom. This is a very well worded letter and is VERY true. My “friends” can be so insensitive sometimes and so can many other people who barely know me. And the part when you said people try to tell you all these different remedies is extremely true! I just tell them to get arthritis and then have to deal with it. Thank you for writing this letter, it is nice to hear someone who has the same feelings as me and is going through what I have to go through. I hope and wish the best for you!

  6. This is a great letter, I now know for sure that there are people out there who feel so much like I do. THanx so much. I am one of those teens with spondy or AS and I put up with this every day… im not mad at anyone for how they feel, I just wish people didnt judge me for how i felt. Thanks again

  7. Thank you so much for writing this letter, you expressed it perfectly for me. I feel guilty, and sad, and frustrated every day because I’m just not the person I was. I have AS and it does, indeed, feel like having the fatigue and body aches of flu every day. I know that most people don’t “get” it, but I’m so grateful for my family and friends who have stayed by my side through what must appear to be a lack of will on my part. Your letter is a blessing, because sometimes even I start to feel like it’s “all in my head.” Love to you.

  8. This letter put into words exactly what I would like to say to some of the people in my life. I am blessed to have a family that knows me well enough to respect and treat me with love, but I see judgement in the face of many and it makes things harder than they need to be.

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