I’m just a little bit over two years into my diagnoses of chronic diseases. Who knows how long I’ve actually had them, or at the very least had the beginning symptoms. But March 3, 2013 feels like it was a mix between my D-Day and my Birth. It’s bizarre to feel like your world is ending at the very exact time that every unknown and every question starts to have an answer.
Being diagnosed both answered pending questions about my life thus far and opened up a Pandora’s box of more unknowns. I have no idea how different the last two years of my life would have been if none of my health issues ever surfaced. And as awful as they are, I don’t think I would trade the depth of strength I have been able to acquire in that short amount of time as well. I pride myself on always having been a relatively strong person. I’ve always had some sort of health issue or surgery or illness. I was a pretty sick kid actually. But the strength I’ve acquired in the last two years is a different and a more robust kind of power.
I think I’ve talked before about how lonely these diseases can be. Aside from the fact that the diseases are hard and chronic and will stay with you for the rest of your life, they also hide themselves very well. Tell me to stand in front of you and point out what’s wrong with me? I can’t do that. Or tell me to show you where the pain is, or where the diseases and damages are? I can’t do that either. Almost 100% of my chronic illnesses are invisible. On the outside, I look perfectly healthy and normal. It’s a blessing and infuriating all at the same time.
Am I invisible?
Sometimes, it sure as hell feels like it. There are days (probably more frequent than I care to admit) that I wonder what it would be like if a family member or friend of mine felt my life for 24-48 hours. How would their view of the world, of me, change? I wouldn’t wish an ounce of my illnesses on my worst enemy, but the easy way out would be if someone could just trade bodies with me for a couple days. Obviously not realistic, but an interesting thought at least.
Being a social media professional has helped my coping and acceptance of these diseases more than most anything else. The digital world is a friend, a family member, a support system, a doctor, a caregiver, a woman, and a chronic disease fighter. I have met all of these characteristics through social media.
One of the first steps I took two years ago was to search social media for information, education, and supports groups or chat rooms. I searched hashtags on Twitter: #ankylosingspondylitis, #autoimmunedisease, #chronicillness, #fibromyalgia, #arthritis. I searched for private support groups on Facebook and requested to join them. I read blogs, I read scientific journals, I researched treatments, I asked questions of my peers, and I read and I read and I read.
Not only does the social media community allow you to ask questions and receive first accounts of other people’s experiences like your own, but it also addresses that feeling of loneliness, even if it just addresses the tip of the iceberg. Being lonely with chronic illness is not about having physical people around you, I have that and I love each and every one of you dearly. Rather, this loneliness lies in the isolation of having chronic diseases and the difficulty in finding others that understand or have experienced exactly what you’re going through. Finding that resource is absolutely invaluable.
I’m extremely open with what my diseases are and the fact that I have them. I have no problem sharing that and will tell anyone who asks or elaborate for any questions they might have. I’m not so open about how I feel physically, especially on a day to day basis. That’s not to say that I lie about it, I’m just not vocal about how I feel. I’m working on it though. I guess I somewhat hide that part for a few reasons. For one, it’s hard to describe. Especially since, as I stated, I look completely fine. So I normally just say I’m not feeling well that particular day, if I say anything at all. Another reason probably has to do with frequency. I have symptoms in some form or another every single day. And the average person is not cut out to deal with someone saying they don’t feel good 24/7. As humans, we are hard wired to want to fix something and see the end in sight. Well, there is no fix for chronic diseases, and there is no end in sight. Therefore, I imagine it would make others uncomfortable for me to vocalize every day to day symptom I have.
That’s not to say I’m ashamed of it, or embarrassed. I’m definitely not. But I know how I feel every day and the hurdles I have to jump over to retain a semblance of normality. I guess for now it’s enough that I know the hard truth and not anyone else.
That may or may not be healthy, I’ll have to ask my therapist, haha. But for now, it’s what works.
Anyway, I guess my point of this post is that invisible illnesses are lonely. They can take a toll on someone’s mental health. I’m not perfect, and I have my days or weeks of depression. But my advice is to search for those groups. Use the tools we are lucky to have in this technological age and find others who are living their lives through the same diseases you are.
You could say that’s the point of this blog. I want to connect with people. I want to become an advocate for chronic diseases and meet and talk with others. If one person in one small corner of our world is comforted or at least less alone by any of my own words, then everything is worth it. Everything happens for a reason.