A Letter to my Healthy Friends
Hi friends. Let’s talk about chronic invisible illness.
I have diagnosed chronic illnesses. This is why I’m writing this.
Some of you know this, and some of you probably had some vague idea. But the vast majority of you (you followers and friends, whom I haven’t interacted with personally in a while) don’t really know anything about it. So here we go.
I have been officially diagnosed with both Irritable Bowel Syndrome and Myalgic encephalomyelitis (now called Myalgic encephalomyelitis). “Officially diagnosed” is a huge deal in the invisible illness world, by the way. It took years to get a diagnosis, and I was thrilled about it (at the time. It’s exciting, to put a label on what otherwise seems like inexplicable pain. You hope (a little foolishly) that maybe there will more answers after a diagnosis, more treatments that work, or more people who understand since you can now spout a name and a few scientific facts.
Speaking of facts, here they are: six out of ten people suffer from an invisible, chronic illness, and one out of five have chronic pain. One third of Americans have been diagnosed with more than one chronic conditions.
These include, but are not limited to (here comes a long list):
Alzheimer’s disease, Atrial fibrillation, Attention deficit hyperactivity disorder, Autoimmune diseases (such as ulcerative colitis, lupus erythematosus, Crohn’s disease, coeliac disease, Hashimoto’s thyroiditis, and relapsing polychondritis), Blindness, Cerebral palsy (all types), Chronic graft-versus-host disease, Chronic hepatitis, Chronic kidney disease, Chronic osteoarticular diseases (such as osteoarthritis and rheumatoid arthritis), Chronic pain syndromes (such as post-vasectomy pain syndrome and complex regional pain syndrome), Dermatological conditions (such as atopic dermatitis and psoriasis), Deafness and hearing impairment, Ehlers–Danlos syndrome, Endometriosis, Epilepsy, Fibromyalgia, HIV/AIDS, Huntington’s disease, Hypertension, Lyme disease, Mental illness, Multiple sclerosis, Myalgic encephalomyelitis, Narcolepsy, Obesity, Osteoporosis, Parkinson’s disease, Periodontal disease, Polycystic Ovarian Syndrome, Postural orthostatic tachycardia syndrome, Sickle cell anemia and other hemoglobin disorders, Substance Abuse Disorders, Sleep apnea, and Thyroid disease.
This is an incomprehensive list of chronic illnesses, each with varying degrees of intensity and commonality. I am only discussing physical illnesses (because that’s what I know most about). It’s important to also remember the invisible mental illnesses, a vast and lengthy topic on which I am not qualified to write. It’s also important to remember that each person is affected differently by their condition, and every case is unique.
I guarantee that you know at least one person with one or more of these illnesses.
These people do not always look sick. They are not always old, and have not made poor life decisions to get to this point.
These people have to learn to live with a body that betrays them, and often have to give up the dreams and activities they love in order to live with less pain and fatigue.
These people may not look sick, but they are. They spend a lot of their time justifying or explaining this fact, and it’s exhausting.
I am one of these people.
Let me be clear, I’m not saying this so you’ll feel sorry for me, or so you’ll always remember that I’m sick and must be pampered. I’m also not saying this so you will feel guilty for being healthy. I am grateful for the life that I have, and I am genuinely glad that you’re not sick!
I’m saying this because I want you to know. I want you to be aware of those in your life who are suffering in silence and isolation. I’m also saying this because I want other people with chronic illness to know that they are not alone.
Probably, if you’re reading this and you don’t already know I have a chronic illness, you don’t actually know me that well. If you didn’t know, that’s okay. You don’t have to reach out and apologize for my illness (which is not your fault). But there probably is someone you are close to who struggles with something invisible and chronic. Support them.
People have made lists of ways to help your friends who are hurting a lot and all the time. I will not reinvent the proverbial wheel, but instead direct you to some helpful links that might be of use:
Here is a list of platitudes/remarks not to say.
Here is a list of ways to care for invisibly sick friends in your life.
Here is a list of cute doggo pictures, if this letter has made you sad and you need a bit of cheer (or just because puppies, you know?).
Most of all, be aware, and be compassionate. Ask them what they need, and help them with that (even if it doesn’t make sense to you, or doesn’t seem like a solution).
As the old, very trite, but still valid saying goes: Always be kind, because you don’t know what the other person is going through.
Thank you for reading this, and for being supportive friends.