Having a chronic illness is hard. Having a chronic illness with no friends who understand what you’re going through? Even harder.
Ehlers-Danlos Syndrome affects every part of my life. Physically, emotionally, financially…it’s rough. For a long time I felt isolated from the rest of the world. Whenever I try and explain what I feel each day to someone healthy, most of the time I get met with generic “Just think positively!”, and, “Oh I knoww, I stubbed my toe the other day and it hurt SO bad, you have no idea!” completely unaware types of responses that leave me feeling even more alone.
Once I got my official diagnosis when I was 20 years old, I met a friend with the same condition in a support group. Having her friendship changed so much for me in terms of dealing with my declining health. (I’m SO thankful for you, Janey!!!) It was then that I realized how important having someone who truly “gets it” is.
As my body has continued failing me during the last 5 years post-diagnosis, my ability to relate to healthy friends has declined as well. This is not to say that I don’t have amazing friends who don’t struggle with a health condition, because I DO, and I don’t know what I’d do without them! They care for me and keep me feeling connected to the “normal world,” and I am so thankful for them.
(I have definitely also had my fair share of healthy friends that were toxic simply because they didn’t try to understand or respect my health. That’s a post for another day!)
The bond I have with the friends who have the same illness or another debilitating disease is unique, and so very needed. We understand each other on a level others can’t. We never get upset when plans get canceled because one of us doesn’t feel well, and we understand that even if we don’t see each other for a month due to our health, we still love and support one another just as much. Even if we don’t respond to messages right away, we know it’s not personal.
It is these friends who I know deeply empathize with me when I vent about my body failing me at 26 years old.
It is these friends who I know understand the longing for a more normal life.
It is these friends who know what you need to be comfortable without you having to give a detailed explanation.
It is these friends who offer you Zofran as casual as one offers a person a mint, just in case you need one.
It is these friends who don’t cringe when you show them your visible ailments.
It is these friends who allow you the break of having to explain yourself, and provide you the safety of being able to be yourself and be known.
Without these friends, the stress of having such a disabling illness would likely be burying me. I will always be extremely grateful for their love and support.