Chronic illness makes people uncomfortable, that I have come to know for sure.
But this discomfort or lack of understanding manifests itself differently in each of us. It’s a fight or flight response, some find their strength and others run. There are four types of people you encounter after a chronic illness diagnosis. I’ve recognized them all, seen in the new people I meet and disguised in the individuals I thought I knew.
The first category is pretty recognizable: it’s your support system, the ones who always have your back. You probably began picturing them as you were reading this because there is no question of who these people are. I know who mine are. They are my family, comforting me and encouraging my quest to heal myself of this invisible illness every step of the way. Never once questioning the validity of my pain and hurt, they put on their armor and marched into battle with me. I could not imagine having fought through this past year and half without my immediate family by my side, both figuratively as they continued to comfort me and literally as they physically held me up so I could walk down the hall.
The second type is on the very opposite end of the spectrum. These individuals are only too happy to give me their opinion on my diagnosis, particularly when I don’t ask for it. They are the family members and friends who ask me if I’m sure it’s not Chronic Fatigue Syndrome or mention some illness their friend’s husband’s sister has, whether their musings hold any merit or not. Some have yet to realize the dangerous culture of treating doctors like gods, many place too much confidence in silence, and they are ignorant of their ignorance when it comes to chronic illness. They haven’t had the moment I did where I learned the truth about the medical system. This type of person looks at me like I’m crazy, the way countless specialists have, like the ENT, neurologist, and cardiologist, who were each far too content to blame my symptoms on migraines or anxiety, before passing me off to the next.
The third group want to be supportive, but are not, as they distance themselves to be spared the physical pain and emotional damage of chronic illness. Unless there is a physical or emotional obligation to stay, they don’t. They fly. They fly far away from the sinister plot of the spoonie story. This classification is filled with people who preach positivity, who don’t confront problems unless they come with a ready-made solution. They are frightened by the idea that an individual must live daily with the knowledge they are sick and that they won’t ever be fully healed. They are confused when there are no textbook guidelines that lay out an exact and fool-proof plan. They are paralyzed by the helplessness when there is no quick fix. How, in a society with so many answers to medical problems, where cancers can now be cured and other conditions avoided, are there not remedies for every disease? The thought that there are illnesses (in fact, many of them) out there that cannot be treated, it seems impossible. Any facts that point to contrary, including patients living as proof, are ignored. They choose to believe in medicine.
But not all of us have that choice. I don’t have that choice. And if a once vibrant and lively young woman who was just starting out in life can be targeted and dragged down by illness, it means no one’s safe. In my painful and life changing fight against a chronic condition, others are reminded of how fragile their healthy life is, that in one moment it can all come crashing to the ground. I am the reminder of the way life can screw you over. And who would knowingly want to be reminded of the negativity on the opposite side of the die, the fate they have every chance of receiving each time they roll?
The fourth and final type are those who are somewhere in the middle, who are quiet, who offer me neither there rebuke nor their support. From my place in the eye of the storm I can seem them on the outskirts, close enough to assess the damage, but far enough to avoid harm themselves. Still, I can watch their wheels turn and questions form, but no words escape the tip of their tongue. They care and that’s why they remain just slightly in my life, in eyesight so I know they’re there. But I can tell they are afraid of getting too close, of adding to my damage or burning themselves by venturing too close to the flames.
Often, they confess that they are unsure what to say or how to act. So now I speak directly to them. I will give you an answer to your question. How to act around or treat someone with a chronic illness is really not that difficult a concept to grasp. It’s not rocket science. It’s really quite simple.
Treat me like the old me, but with a little extra kindness and more patience than before. Give me the consideration I have a right to and the respect I deserve, the esteem many spoonies are unjustly forced to go without. The girl who was your friend is still here, buried somewhere beneath this surface of discomfort and pain. Be there for her.
If you have questions, why not come straight to the source, rather than filling in the blanks with the worst of your imagination? Why not ask them of the patient who has been forced to become the expert, who can probably tell you more than most will ever know? I won’t be bothered by your questions, but rather take it as a sign that you care enough to ask.
Ask me how I’m feeling instead of assuming because I don’t “look sick”, everything is okay. There is more proof you can’t see in this broken body. Don’t discount it.
When I tell you what I need, don’t take it as a suggestion. I’ve told you explicitly where I need you and how you can give me support. All I require is that you show me you were listening. All you must do is follow through. Please. I already feel so let down by my body, I couldn’t stand to be let down by you, too.
When you hear that I’m not doing well or am in pain, tell me you’re sorry. When you hear that I’ve received bad news, tell me you’re sorry. When it’s been a while since you called or stopped by, tell me you’re sorry and mean it when you do.
Text me when you think of me, even and especially when I don’t respond. Send me a message so I know you care, if only the words, “I love you.” Take the time out of your busy day to make an appearance in mine, one I can assure you is wide open and waiting for your arrival to bring me an ounce of joy. Let me know I’m not forgotten. Let me know you are always there. As my illness rages on, from days to weeks and from weeks to months, remind me I am not alone. Tell me once, tell me twice, tell me until I couldn’t possibly forget. Then tell me again.
Now really listen. This next part is important.
Believe me. Believe me. Please, just believe in me. Don’t fall for the same trap that has led me to lose the people I once thought I would never be without. Don’t question my illness because of my outward appearance or because one day I appear “better” than another. Listen to the words I say (and especially the ones I don’t) rather than looking for the slightest piece of evidence that I could be lying. Just so you feel justified in turning your back on me. Decide to take me at my word, to give me your faith, and to stand up for me when others don’t.
If you’re afraid of it being wrong or upsetting or that I might misunderstand, know that the act of trying to be there for me is often worth much more than the words you voice. By pushing past your discomfort and talking to me, you are are saying the right thing. Speak up, don’t stay silent.
And if you want to help me, but don’t know how, just ask. Ask me what you can do. If you you want to say something, but don’t know what, just ask. Ask me what to say.
This is Chronic Illness 101. Class is in session.