An autoimmune disease is defined as: a disease in which the body produces antibodies that attack its own tissues, leading to the deterioration and in some cases to the destruction of such tissue. There are more than 100 autoimmune diseases out there and they can affect almost any part of the body, including the brain, heart, muscles, skin, eyes, joints, lungs, digestive tract, blood vessels, glands and kidneys. Each one has their own list of symptoms but, inflammation is present in pretty much all of them. So if there is one thing that everyone living with an autoimmune disease can relate to, it’s the chronic fatigue that we feel almost every day.
When you’re diagnosed with one autoimmune disease they may tell you that it’s manageable, but what they don’t normally tell you is that you’re at risk for developing another. A lot of autoimmune diseases present with nonspecific symptoms and can relate to each other in many ways, so figuring out which one can be difficult and time consuming. Symptoms may include nausea, fatigue, weight loss, dizziness, pain, weakness, and low-grade fevers, which can be caused by so many other things other than autoimmunity. For example, lupus and rheumatoid arthritis both cause fatigue, joint pain, anemia, swelling and weakness, so distinguishing between the two may be very difficult.
I am in multiple support groups for my autoimmune diseases and I’m sure every person in them can tell you that just living with one is a full time job. It can become very overwhelming having to keep up with multiple illnesses, going to school, trying to keep a social life all at once, causing stress and anxiety. Lifestyle changes can of course help symptoms, but that’s not always the case. Decreasing stress, getting enough rest, eating healthy and exercising do play a role in how you feel, so when you have an autoimmune disease, being on your A game with all of these things is important.
I am very fortunate to feel as good as I do and receive the treatments that I do. For some, that may not be the case. Finding the right combination of drugs for each patient is also a long process. It took me about 2.5 years to find a combination of medication that worked together. I take pyridostigmine, prednisone, imuran, B-12 supplements, Calcium supplements, and get IVIG infusions every few weeks. But another person may be on a completely different regimen.
A lot of people who are chronically ill may refer to themselves and their friends as “Spoonies” and I’ll explain why. It goes something like this: One day a woman with a chronic illness was eating in a diner with her friend. Her friend asked her what it was really like to live with a chronic illness, and, struggling to find someway to really get this right, the woman collected spoons from the other tables. She then walked her friend through a day, taking away spoons for each activity. The physical removal of a spoon helped her friend realize the real pain of the loss of “normal,” the endless and emotional calculations one who is sick has to make on a day-to-day basis, and the ever-present knowledge that you are sick – its own special isolating misery.
It really is a great analogy. Another one is the “cell-phone theory”.
You plug your phone in at night and wake up the next morning and it’s at 100 percent. When you go to sleep you’re “recharging” for the next day. When you have an autoimmune disease you sometimes don’t know how you will feel the next day. Maybe you wake up and feel 83 percent or maybe you feel 40 percent. But that’s all you have so you have to pick and choose between what you need to do and what is least important. So say it’s a Friday, you have work, school and chores. Those are all things you have to do, but going out with friends that night is not a must, so you cancel because you started the day at 83 percent and now only have 20 percent left. You have to put the phone in battery-saver mode so that when you wake up the next day you don’t feel like you’re charged 83 percent like the day before.
People may research the definition of an autoimmune disease and you get the lame answer of “our bodies are attacking themselves”. I am here to tell you it’s so much more than that, good and bad.
Autoimmune disease is constantly fighting to prove your worth and where you stand in relationships, friendships, and families, where you work and in medical offices. You have to advocate for yourself and express that it’s not “just anxiety” and that you’re not trying to be a nuisance and complain, the feelings you are having are real.
Autoimmune disease is loneliness, leaving you with just your immune system. It’s canceling plans that you were looking forward to at the last minute. It’s nights spent at home alone not wanting to call your friends explaining how you feel because you don’t want them to look at you like you’re complaining all of the time.
Autoimmune disease is scary. Sometimes you feel like a guinea pig because many of the medications that we take have not been around long enough to know the long term effects. At any age, being diagnosed with an autoimmune disease is hard, but when you’re young, it’s taking chemotherapy drugs that in years to come could potentially cause infertility. It’s choosing between being able to get through your day or the risk of not being able to have children down the road.
Autoimmune disease is having to quit dream jobs because you find that it’s just too difficult to get through the day. It’s not because you wanted to give up or because the work was too hard, you just couldn’t handle the stress that it was putting on your body (I have changed my major 3 times now).
Autoimmune disease is annoyance and anger. Doctors may diagnose you and toss you some pills and tell you to go to therapy to deal with your “problems” not providing real answers and comfort.
Autoimmune disease is faking how you truly feel because you fear others will think you’re an annoyance. Often people ask you how you’re feeling and most of the time I answer with, “I’m fine”.
It’s fatigue, vomiting, joint pain, hair loss, cancer, forgetfulness, burning, anger, pain, infertility, surgeries, infusions, random hospital stays, organ transplants, needles, heart/kidney/lung failure, and so much more. It’s being painfully aware of the side effects and complications.
After knowing all of this and living it, it’s so easy to get down on yourself. But I refuse to do that.
Autoimmune disease is courage. It’s facing all of these things and still staying strong.
It’s beautiful. You are left with scars from surgeries and infusions, they’re tattoos with better stories.
It’s inspiring. I have heard so many stories from other spoonies and they sometimes leave me speechless. There are so many strong people out there.
It’s appreciation. When you can’t do everything “perfectly” all of the time, you spend your good days cherishing everything you have.
It’s life changing. This can be both good and bad but always try to focus on the positives. Going though all of this made me a better person. I have met some amazing people along the way. Sometimes you just need someone else to pick you up and give you the courage to keep going. Support groups help you stay positive when you are feeling down. These are the people who will be there for you when you can’t depend on yourself. And that’s absolutely okay!