03/23/2024
LETTER FROM RA
Dear Rheumatoid Arthritis Survivor:
Hi.
My name is Rheumatoid arthritis.
I’m an invisible autoimmune disease that attacks your body inside and out, making you want to scream sometimes and cry. I am now with you for life. I’m so sneaky—I don’t always show up in your blood work. Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and any way I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over. Remember when you and energy ran around together and had fun? I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything. I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me.
Crying for no reason? Angry for no reason? That’s probably me too. I can make your hair fall out, become dry and brittle, cause rashes, dry skin, the sky is the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight.
I don’t discriminate.
I can invade your skin, your joints, your lungs, your thyroid, your brain, your liver and any other tissue, organ or bones I wish.
Some of my other autoimmune disease friends often join me, giving you even more to deal with. The list of my friends is quite lengthy. I probably have more friends than you do because I've taken most of yours away.
If you have something planned, or are looking forward to a great day, I can take that away from you too. You didn’t ask for me. I chose you for various reasons.
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder, blood pressure, blood sugar, heart issue among others? That’s probably me.
Can’t get pregnant, or have had a miscarriage? That’s probably me too or the medication you take to try to escape fron me.
Shortness of breath or “air hunger?” Yep, probably me. Liver enzymes elevated? Yep, probably me.
Teeth and gum problems? TMJ? Hives? Yep, probably me. I told you the list was endless.
You may be given an ibuprofen, get massaged, and told if you just sleep and exercise properly I will go away. You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel.
In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist. Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said that you can't do things you used to be able to do 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.”
They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things. Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of medications for YOU. Not what works for someone else.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand. I am an invisible illness. I am YOUR Chronic Illness.
Always and Forever
RA 💙💜🥹🙏🏾
