edits: 10/28 – I made a few edits based on feedback. Original stuff has a strikethru, new stuff next to it.
I want to start this post with a disclaimer – a lot of my friends are going to see themselves in this post, but this isn’t actually about you. It stemmed from a conversation I had with my husband, and this is about me. Also, in order to illustrate how serious this is, I am going to tell you a very raw and somewhat graphic personal story. Brace yourself.
Let me be blunt – having a chronic illness is HARD. There absolutely is a subset of people who are maladaptive, who play it up, who don’t want to get better because they are attached to a sickness identity, but they are in the minority and harm medical and public opinion of the rest of us who are sick but truly do want to get better. I’m not asking you to indulge that subset of people, but I’m also going to tell you that sometimes, it can be hard to tell us apart. We all have different experiences, and the same disease can be harder for one sufferer than the next for reasons like variations in symptoms, symptom intensity, and response to (and availability of) treatments. If you’re the bible reading sort, refer to Matthew 7:1, “Judge not, that ye be not judged.”
I’ve realized that not a lot of people know what to do with a person who is always sick. Friends go through phases, generally starting out as very supportive, thinking they can help their friend through the crisis. The next phase involves the friend thinking that the sick person can’t possibly still be sick, and that maybe the problem is psychological (I have been told, “you would feel better if you just got out more.” or “if you just took this pill <an antidepressant>, you’d feel better.”). Even if the friend doesn’t fall into the second phase, they almost all move on to the abandonment phase – they just stop calling. It’s exhausting dealing with someone who is always sick, and I can’t really fault an outsider for this. Why suffer if you don’t have to, right?
I’m going to make a set of bullet points, with no particular order of importance of what you can do to be a better friend to someone with a chronic, isolating illness. I can only speak for people with ME/CFS, autoimmune disease and dietary restrictions, as those are the things that I live with. I also can’t speak for all of us, as there are people who have a different perspective than I do. I would urge you to have an honest conversation with each person you know with a chronic illness and find out his/her preferences, and take those people at their word. This is my personal position on each subject, but you can always ask the chronically ill person in your life how he/she feels about each point.
- Call me. Don’t worry that you might wake me up, or that I might not want to talk to you. I don’t have to answer the phone when it rings, and even my cell phone has an option to reject an incoming call and send it to voicemail. I am alone. A lot. Part of keeping me sane is having social contact. And call when you say you will. I wait by the phone for your call like a teenaged girl hoping to get invited to the prom, and am just as disappointed when your call never comes.
- Invite me to hang out. Again, don’t assume that I wouldn’t want to do whatever it is you have in mind. I have enough people and a chronic illness taking choices away from me. I have doctors saying “You can’t do that anymore,” or “You need to start doing this.” Some days my body says, “I don’t care how much you were looking forward to doing what you had planned today, I’m not letting you out of bed.” Offer me the choice – don’t assume you know what I need or how much I can handle. Again, human contact is important.
- Keep asking despite the fact that I have to turn you down. My husband informed me that if I told him more than a few times in a row that I didn’t feel up to doing something, he just stopped asking because he felt
rejectedlike it was adding stress to my life. Part of the problem was timing – he would ask when I was clearly overwhelmed if I wanted to add one more HUGE thing to my schedule. I am comfortable saying, “no” when I have to, and if he had asked me to do things when I was clearly not overwhelmed I would have said, “yes.” I may only be able to say “yes” one out of ten times, but that one time I can do something is important to me. The invitation alone is important to me, so that I know you want to be with me. You just have to be flexible with the timing. I’m not rejecting you, I just have limits.
- Don’t try to convince me “a little bit isn’t going to hurt you.” I didn’t choose my food and activity restrictions, and I would love to eat and do things that are just not a good idea. The problem is, you don’t have to pay the price for my mistakes. If I eat bread, it rips up my stomach and I lose at least one entire day of my life. If I eat soy, my face goes numb, my brain lights on fire, and I can’t think. If I exercise too much, my body shuts down, as it just doesn’t have the energy stored to pay for it. I know my limits. Please respect that I do, and I’m not just trying to inconvenience you.
- Ask me how I feel today, don’t just assume you can tell by looking. For many reasons, I try not to complain too much about what’s wrong with me. My chiropractor found me out because when I have done too much and say I’m fine, my body betrays my story and requires more adjustment. He then gives me the lecture about how he knows I don’t do anything half way, but maybe I need to figure out how (I told you, I get plenty of instruction about what I can and can’t do). I often look just fine when every muscle in my body or my brain is on fire, but sometimes I have dark circles under my eyes when I feel just fine.
edit: My husband points out that I’m going to downplay how bad off I am. That may be true, but the answer to, “Do you want to talk/hang out with me?” is always truthful. I sometimes go out when I feel bad because I need you more than the rest.
- Overall, don’t forget about me. I know you have a busy life. I know you have kids, a job, social engagements. I don’t, because of my illness. I have doctors appointments. I’ve found that I can call some of my friends, leave them messages on Facebook or on voicemail, or try every way I know how to contact them, but they don’t get back to me for weeks or even months. I’m just not a priority. I get that, but I need to know I’m still valuable to you. Send me a text message saying that you miss me. Call me and tell me you only had five minutes, but you just wanted to know that I’m still here and that I’m ok. Make sure I know that you know I exist!
I actually want to address that final point in great detail. The thing is, people who get ME/CFS tend to be people who used to be very active, who used to be involved in a lot – that’s why this disease was given the derogatory name, “yuppie flu.” We are high achievers, and this disease takes all of that away from us. We didn’t just decide we didn’t want to compete and fake an illness to get out of the rat race – on the contrary, I thought this was no big deal and tried to figure out how to stay in the working world. This “high achiever” thing actually has a point, at least in my world, and I’m betting in others’ world as well. You see, I get my entire sense of self worth from what I do. With this disease, I feel completely worthless. (This is the part where I tell the raw, graphic story).
I, like many other ME/CFS sufferers, had a very rough upbringing. There are some people who aren’t going to like that I am telling this story, but I wouldn’t have it to tell if the people involved hadn’t behaved the way they did. You see, I was cruelly abandoned by both of my parents. I am not talking about not seeing eye-to-eye with these people and having a falling out, I am talking total obliteration of the most primal bond that people experience. My father informed me, when I was maybe 14 years old, that if he had to choose between me and his girlfriend (a choice she asked him to make, not me), he would choose her. He said it was my fault she didn’t want to be with him. They got married shortly thereafter, and are now divorced. My mother left me not once, but twice. The first time was when she was escaping my abusive father – she left all of her children behind and saved herself, starting a new family and naming her new children after the old ones (middle names). The second time was after my father kicked me out and sent me to live with her. I had just turned 16, and my mother found it difficult to cope with the fact that I was back in her life. She had me locked away in a mental institution for a few days, but when they evaluated me they told us the problem wasn’t me, it was her. She then told them, “I don’t want her anymore – she reminds me of her father.” She moved and left me with another family under the guise of “letting me finish the school year”, and never even called to see how I was. I haven’t seen her since.
I watch a lot of Dr Phil these days, and I keep hearing him say something to parents “You are writing on the slate of who your children are. What you do and say to the affects them deeply, and children have a way of thinking that everything is their fault.” He’s right, but I didn’t just make that assumption – my parents told me it was so. I don’t care if they said these things in fear or anger or just plain stupidity, they said them to a little girl who was forming her sense of place in this world. This isn’t something you just “get over.” This is something that affects the rest of your life.
I spend my time thinking things like, “If I wasn’t good enough for my parents, how could anyone else want me?” I am terrified of making people feel like I am asking too much of them, so generally I don’t tell them what I need for fear that they, too, will reject me. I don’t tell people how bad off I am because I don’t want them to abandon me because I complain too much. I suffer in silence (until right now) because some people judge me harshly when I say anything at all. I only tell the world maybe 10% of what I deal with, lest they think me a whiner. I wait until my husband goes to bed at night, turn the tv to something I don’t have to think a lot about, and cry for hours on many, many nights.
I came pretty close to committing suicide once. No one, not even my therapist knew I was going to do it, because I didn’t want anyone to stop me. I had a solid plan, the opportunity presented itself, and no one would have known until the deed was done because no one was connected enough to my situation to know how much I was suffering. Well, there was one person. Dr B made it clear months before, when he thought I was giving up, when he thought I might be suicidal, that it was not ok with him if I ended my life. We had a fight about it. But it was only the knowledge that it would wreck his life if I ended mine (brand new doctor loses a patient… yeah, not cool) that made me look one more time for the answer to what was wrong with me. I didn’t tell him, or anyone else what I was planning to do, but I was hours away from letting my husband, or a cop, or my cat sitter find my body floating in a bathtub full of blood.
I don’t want anyone to think I’m there anymore. I have figured out ways to have regular contact with the outside world (although Facebook seems to be taking some of that away). I have a sense of self-worth through my shop (more than getting paid for my work, I feel good when people simply “like” my work or feature it). A few of my friends have come to understand what I was talking about in this post and they DO make a point to tell me that it’s ok with them that I take up space in this world… but I still struggle. Every day. Some more than others. And no, I don’t tell you about it. I don’t want you to leave me, too.