It is March 1st, and therefore the official launch of autoimmune disease awareness month! For many of my followers, you know what an autoimmune disease is and how it affects your life, accomplishments, relationships, and wellbeing. But for others, it’s our job to inform and increase awareness.
The dumbed down medical definition of an autoimmune disease is that your immune system suddenly gets really confused one day, and mistakes your good, happy, working cells for foreign, bad cells and needs to attack them. In essence, your body is fighting itself and killing off its own good cells and tissues. It’s not contagious, we didn’t “cause” it in any way, and no, it’s not a convenient excuse.
In my opinion, however, anyone can google what an autoimmune disease is and discover a definition. But that’s where it stops. Someone in good health may know no more. So I have created definitions in an attempt to spread more accurate and relatable awareness.
Autoimmune disease is constantly fighting to prove your worth and capabilities in your relationships, families, places of employment, and medical offices. You have to actively advocate for yourself to express that you are not a nuisance, a pain, or someone that will bring down someone else.
Autoimmune disease is loneliness. Crippling, agonizing loneliness that leaves you with just your immune system. It’s missed birthday dinners, cancelled drinks with friends, nights at home alone. It’s coming home to an empty house after a doctor’s appointment, not wanting to call your friends to talk about what you’re going through because you’re afraid they will see you as whining or unable to cope.
Autoimmune disease is mourning. A diagnosis at any age shocks your psyche into a new life plan. It’s being young with Rheumatoid Arthritis and prescribed chemotherapy drugs, knowing that taking the only medication proved to get you out of bed in the morning is the same one that will cause you infertility in a few short years. It’s picking your ability to walk from the bedroom to the kitchen over a lifelong dream of having children and grandchildren. It’s pulling back from dream jobs because you cannot handle the stress or demand of it anymore, not since your immune system started giving up. It’s inability to live in your favorite areas of the country, because the climate conditions produce a severity of your symptoms that is unbearable. It is adjustment and loss, and it doesn’t ever seem easier to accept.
Autoimmune disease is anger. Pent up frustration that no one is listening to what you are saying. Doctors assume a diagnosis, toss some pills at you, and send you on your way, not providing real answers for your symptoms. Family and friends hear you talk about your disease and start offering their advice on how to be “cured.” These diseases open up each person to a debilitating sense of silence that you’re placed in by the medical and general populous society. When someone asks how you’re feeling, you reply, “Fine! Thanks!” because they often will not really listen. Autoimmune disease is faking health and wellbeing.
Autoimmune disease is inability, incapability, and fatigue. You are jealous of those people who state, “there are never enough hours in the day!” But you wake up at 8 am and think, just make it through these 24 hours, and maybe the next ones will be better.
Autoimmune disease is being told you talk about your diseases too much, but they drive every aspect of your life so you can’t help it. Or it’s being told you don’t communicate enough because you feel that no one understands what you’re fighting against.
Autoimmune disease is pain. Constant, fluctuating, sharp, dull, aching, throbbing pain.
Autoimmune disease is living your life largely based on luck. Sure, we can work hard to take certain medications, exercise, and diets, but even in the most controlled situations we can flare. It’s crossing your fingers that you don’t pass out at the altar on your wedding day, or that you don’t pass your diseases onto your children.
It’s vomiting, hair loss, itching, burning, dryness, tenderness, joint pain, organ transplants, infertility, chemotherapy, personality adjustments, forgetfulness, facial numbing, surgeries, needles, kidney/liver/heart/lung/pancreas/thyroid/brain failure, strokes, cancer, death. It’s always being in pain, and never knowing if it’ll get better or worse. It’s being agonizingly aware of risk factors, threatening symptoms, and impending complications.
Autoimmune disease is watching your loved one – spouse, parent, sibling, child – suffer every second of every day with something that you cannot fix but you would give the world to find a cure. It’s watching the people you hold so near to you experience all of the definitions above, and just trying your best to provide the utmost support and love them through their health flaws. And it is you people who are aware of our plight that allow us to get through the next day. You all provide more understanding and supportive shoulders than we can ever possibly thank you for. So to those who are aware, thank you, because you are a huge step towards our recovery.