For better or worse, it appears I’ve joined the ranks of those suffering from invisible diseases. Invisible does not imply non-existent as so many people imagine; rather, it states that it is a disease that does not manifest itself with outward visible signs others can identify.
“But you look fine,” is one of the worst things you can say to someone fighting the diseases no one can see, because, while that person may look fine, they’re often exhausted, in pain, and dealing with physiological effects hidden from your view.
Being told you don’t look sick makes trying to weather being sick that much harder. What’s worse is that far too many people take their view that no outward signs means no inward disease as an excuse to harangue and ridicule, making life even worse for the one who is sick. This has not happened to me, but I know far too many people for whom that is true.
For me, the greatest manifestation of my invisible illness is fatigue. I simply don’t have any stamina, which means that I have a limited reserve for things like getting out of bed and staying upright throughout the day, let alone exercising or doing the work that I need to. But, I don’t look sick, and that’s frustrating even for me.
I can assure you, however, that I would not be enduring regular visits to doctors complete with blood draws, taking piles of medications, and inflicting daily pricks and injections if I was not sick. Unfortunately, what’s wrong is inside me, and nobody’s quite sure what that is yet.
I’m not saying any of this to get sympathy for myself, but to help anyone who knows other people complaining of invisible illnesses see that they’re telling the truth. They are sick. They are in pain. They are exhausted. They are struggling.
Have compassion. They need it.
DLH
I saw your post first and then this popped up into my news feed. I am so frustrated by my aches and pains and although some days are better than others, it’s always there. I especially hated yesterday as I was hurting then not then back to hurting again. I felt like I was going insane. Then the days when I’m so exhausted I just want to peel my body off and walk into one that matches the ambitions of my mind and soul. I desire to do so much and yet I can only do so little. I see people with removed limbs and tear up because I see them push through so why can’t I? the blood work and ekgs and one dr saying one thing while another says something else. The now lack of insurance so I now have to play my own dr and work through it myself. The fact that “you don’t look sick” even baffles me….well I think I do look sick. The baggy yellow green tint to the skin around my eyes and the swelling of my face but to little kids they still want and need everything that I just don’t have the energy to give. I am praying for you my friend and this is not anything I’d wish on anyone. I was told my issue is anemia but the answer to that is what I’ve implemented now for two months with next to no change. I hope you get answers to help you as well. It’s one thing if it just effected us but it impacts those around us and it’s so hard to see the look of disappointment on their faces. While I feel a sense of camaraderie with you, I wouldn’t wish it on anyone. May we face our struggles head on with everything we got to get the life back we once enjoyed 🙂
All we can do is keep struggling toward the goal, at the end, I guess. Some days, that struggle is very hard.