One of the many frustrations of having an autoimmune disease is that not many people understand how many illnesses and symptoms there are out there under this umbrella term.
According to the National Institute of Health there are more than 80 types of autoimmune disorders. For those who don’t know the term, an autoimmune disorder or disease happens when your body’s immune system attacks itself by mistake. Your white blood cells help protect your body against antigens that come from bacteria, viruses, and cancer cells etc. And the immune system produces antibodies that help destroy these antigens in your body that cause you harm. When you have an autoimmune disorder or disease your immune system can’t distinguish between the healthy and harmful tissue, and as a result the body attacks both.
This can result in the destruction of body tissues, abnormal growths of organs, and changes in organ and body functions. It can also affect your blood vessels, joints, muscles, red blood cells, skin, connective tissues, and more.
It’s also possible to have more than one autoimmune disorder at the same time, though usually I believe one is more aggressive than the other.
I have Rheumatoid Disease, also commonly known as Rheumatoid Arthritis. Rheumatoid arthritis (RA) is an incurable, long-term disease that affects the joints and surrounding tissue, and can also affect organs. RA can affect almost every part of the body and lead to serious complications including but not limited to damage to the lungs, hardening of the arteries, spinal problems, bone degeneration, swelling of the outer lining of the heart called Pericarditis (which I have), and congestive heart failure. And those are just the serious ones.
I personally deal with swelling of my joints, primarily in my hands, wrists, knees, and feet, but also in my elbows, shoulders, and hips on occasion. My other symptoms include exhaustion, nausea, weakness, anemia, fever, weight gain, numbness, migraines, dizziness, and of course a compromised immune system that lends a hand to me developing a myriad of other illnesses.
The point is that Rheumatoid Arthritis is one of many autoimmune diseases, and every single one those diseases reacts differently in the bodies of their hosts. My doctors have been telling me for over a year now that I am their “worst patient”, worst meaning sickest. My strain of Rheumatoid Arthritis is extremely aggressive, and I am on a medication and treatments designed to help me personally. Not everyone with RA has it as aggressive as I do, and I’m sure there are people out there that have it worse.
So when I am approached with comments like, “My friend’s hairdresser has that and she takes ibuprofen and is fine.” Well, that just means your friends hairdresser is extremely lucky to have a small case of RA.
Or hearing things like, “I heard Venus Williams has RA and she’s still playing tennis, so I guess she pushes through the pain because she wants to be better.”
Are. You. Kidding. Me.
First of all (after much research) Venus Williams does not have Rheumatoid Arthritis, she has Sjogren’s Disease. While Sjogren’s Disease is an autoimmune disease, it is not Rheumatoid Arthritis, and the symptoms while close, they are not the exact same. Sjogren’s affects the moisture in your body and the symptoms include dry mouth, dry eyes, exhaustion, fatigue, and muscle weakness. In interviews Venus Williams complained of extreme tiredness, saying her muscles were to weak to lift her tennis racket some days. In fact at the diagnosis of this disease she actually took quite a few months off from her career in tennis because she was too sick, too tired to play.
It is an insult to be compared to someone who not only does not even have my disease, but also to be told that I don’t want to get better. Sure, she pushed through the exhaustion after taking months off, and went back to her career to see if she could keep it up. Though in most articles states she may never play like she used to, and may even be towards the end of her career because of her disease. At the end of the day however, her disease is different than mine. Sjogren’s isn’t a chronic pain disorder. Rheumatoid Disease is.
I wake up every single day in pain. There is not an hour that passes that I am not in some amount of pain. I have not had one day in the last 30 months where I did not feel pain in some manner or another. 2 1/2 YEARS of pain. Think about what your life would be like if you had to live through that. Think about it hard, and then remember that I have. Pain is my life.
Now think about how insulting it would feel for someone to tell you that you must not want to get better. That because you’re not willing to just ‘push through it’, that you must want to stay that way. That you’re unmotivated to be well. That you want to be in pain. Think about what that would feel like.
I am not Venus Williams. I do not have Sjogren’s Disease. My symptoms are more than fatigue and cotton mouth and weakened muscles. Kudos to her for fighting the fatigue, getting out of bed, and committing to her career. She sure is lucky to have such a minimal disease. No. Wait a minute. No she is not. No one is “lucky” to have a disease at all. We just are. We are just trying to live and not be sick and not be tired and not be in pain.
Please do not compare me or my disease to someone else, or some other disease. It is what it is. God, I hate that phrase, but it’s true in this case.
I am what I am. I am who I am. My disease is no longer up for comparison or conversation.
References for this blog were taken from the National Institute of Health, and online sources: Venus Williams article.
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