Over the last week, I have written several blog posts to raise awareness about invisible illnesses.
To an extent, these posts were pretty upbeat - I wrote about what the purpose of the event is, the "30 Things" meme, and finding happiness in the face of my illness and all the negative stuff that inevitably comes along with it. My overall message was the importance of treating other with kindness and empathy.
This post, however, won't have such a positive message. Today I am blogging about the things we don't normally talk about.
I have lived with chronic osteomyelitis for a long time now - almost a decade. As is expected, I have discussed my medical situation with a quite a few people over the years - family, friends, the friends of family members who I barely know, medical professionals, strangers who bump into me at the super market and start asking random questions about my crutches/PICC line/cast/etc. Many of these interactions have been fairly innocent. People ask me how I broke my leg, what the PICC line (I no longer have it, fortunately) is for, how long I will still need my crutches. Some people mention their own experiences with a broken leg while others try to offer advice. I have had people tell me what herbal supplements or alternative treatments cured their sister's ex boyfriend’s mother's best friend's bone infection. I have had other people offer me "medication" for pain or given me seeds to put in my tea to make me better. Some days it feels like everyone and their aunt Betty wants to give me some form of advice. It also seems that as soon as I start talking, most people cut me off to tell my about their own experience with this or that medical condition. People try to be helpful, but they end up talking only about themselves. I don't necessarily mind this. It means I don't have to go into all the details about my own situation and it allows other people to feel useful and that they can relate.
For a long time, I would tune these people out, occasionally nodding my head up and down or smiling politely to show that I was actually listening (even if I wasn’t). It was easy to just let other people do all the talking. The last few months, however, something started to bother me about these conversations. I couldn't put a finger on it for a long time, but I think I finally figured it out.
After my relapse was diagnosed this year, I struggled with a lot of emotions. I also had a massive pile of concerns about my health. And on top of that, I was dealing with all my physical symptoms while still trying to lead a normal life. Going through all this, I really needed support. In the past I had always gotten support from my family. Having moved out on my own, however, posed some new challenges. My mum has been absolutely amazing through everything - willing to drive up to where I lived on a moment’s notice, talking on the phone whenever I needed, responding to my text messages no matter how upset I was. But as a young adult, you need more support than from your family alone. You need friends, and support is something my friends couldn't provide. People brushed me off when I said I wasn't feeling well because I felt ill more often than not; people never asked me how I was doing because I was generally always stressed about scan results or upcoming appointments. On the off chance that people would ask me how I was doing and I would tell them, they would ignore my worries about my health and say "Oh, you just have to think positively" or "Don't worry so much". Or my least favorite, "You just have to look on the bright side; it could always be worse." Instead of getting support, I am told how brave I am, how much strength I have, how other people don't know how I cope so well given the circumstances, how I only have to be keep going a little longer and everything will be fine, et. etc. etc. As if I have some moral failing if I am not brave. When you are chronically ill, people think you just get used to being sick, to feeling blah. They think once you are brave and courageous that you will be like that forever, and that coping skills will last a life time. They paint some beautiful picture of you, a strong stone statue braving time and fighting the wear and tear of the weather; a statue that will last forever and never needs to be repaired or touched up. There is no room for my weaknesses or needs. If I crumble, other people will inevitably succumb to the harsh reality that we are are mortal and we are all vulnerable. Most people cannot handle that, so they give me their hollow advice and tell me about the time they sprained their ankle, or go on about how brave I am, but they never ask how I am really doing. So we never actually talk about how I am doing - how awful I feel, how emotionally draining the situation is, my worries about treatment and fears that it wouldn't work.
The problem of conversations with people offering advice, their own experiences, etcetera is that they minimize what you are actually going through, and discourage you from talking about how you are actually doing. When I told one of my home care nurses in 2012 that I was worried that the infection was not gone, she simply told me I had to think happy thoughts in order for the infection to go away. When my relapse was diagnosed this winter and I learned that I would need more surgery, my mum told one of her friends what I was going through. Her reply? "Your daughter has been dealing with this for so long that it must not have been such a shock. She is used to it by now." People feel the need to relate to other people, so they overlook your needs and compare your situation to one they are already familiar with. People are uncomfortable with the concept of their own mortality, so they avoid conversations about illness and death and minimize your situation. People are unsure how to respond to others, afraid they might say the wrong thing in a difficult situation, so they tell you to look on the bright side, change the conversation or don't say anything at all. And at the end of the day, you are left with all these feelings and worries and you still need support. But that support is hard to come by. So hard to come by, that you slowly stop trying to tell people how you are actually doing. And it can be all too easy to stop talking about those things if we are scared or uncomfortable about them yourself. At least, it feels like that to me. As a result, there is a whole list of things we don't talk about. That is what the big problem with all the interactions described at the start of this post is - the lack of human connection, the loss of words, the empty silence.
So here we are. The things we don't talk about.
I am afraid of time itself - the seemingly endless months that lie ahead of me in my recovery, with hardly anyone but myself to keep me company. The loneliness and isolation is the worst part of being ill. Then there is filling the time with things to do. The boredom. What will I actually do with all that time? And the big one - facing yourself. There is such a thing as being alone for too long. You start to think about things that you shouldn’t, like worries about the future.
That is my next point - worrying. What is the infection doesn't go away? What if it keeps coming back forever and ever, in some endless horrific loop of relapses and remissions? What if it never goes away at all? What if my doctors can't regrow my tibia? What If I can never walk without crutches again? What if I lose my leg? So many what ifs. Normally I try to avoid this type of thinking - it is not good for anything other than driving myself crazy with theoreticals and fear. But the thoughts are always there, floating at the back of my mind. A person can only go through so much before they start wondering what else is going to happen. You don't have a bone infection for almost ten years without accepting that you might continue to fall in the 1% of people who don't get better, even when you really hope you will end up in the 99% who gets better.
Fear - fear for the unbearable pain after the next surgery. I didn't know what pain was until I woke up screaming from surgery in 2008. Pain scares me; pain that can't be taken away or made manageable with pain killers scares me even more. I am so incredibly afraid of the pain that will accompany the external fixator I get next month.
And emotions. The last year has been one big emotional rollercoaster. I don't know if I can handle more. What happens if I get more bad news medically? If things don't go as expected? Will I be able to continue to cope? Will I know if I cross that line between coping and no longer managing?
People do not like to hear these things. I do not talk about them very often but when I do these are some of the responses I get:
How can you have to much free time (note: Losing a chunk of our tibia, bone pain and external fixators are not the same kind of free time as a weekend off or a trip to Disney World)? I would love to have as much time off as you! Why don’t you read a good book? I would love to be able to nap every afternoon…Stop worrying so much. You are so brave, you will get through this. You seem to be coping so well! It must be nice to get be on so many pain killers. I wish my doctor would prescribe me some morphine. You are coping well right now. I am sure you will continue to do so. And the list goes on.
Regardless of these responses, all of the thought, fears and emotions I just talked about are still there. Being told that I am brave doesn’t actually address my fear of the fixator or unmanageable pain or that the bone infection coming back. These things can’t simply “not be talked about” because at the end of the day I need support. Everybody does. And by not talking about these things (and you don’t need to have an invisible illness to experience them) we do ourselves, and I do mean all of us, a disservice. We deny ourselves and others the support (and kindness) we need; we prevent ourselves from forming deeper, more meaningful relationships; we avoid the realities of life; we miss out on becoming stronger, healthier people. We can talk and talk all we want about frivolous things, give unasked for advice, and reminisce about our own experiences when people confide in us and ask for support, but that doesn’t get us anywhere. Not that sharing advice and experiences isn’t important and useful at times, but sometimes we need to talk about the more serious not so fun stuff, and doing that requires us to listen.
So there are really two points to take away from this long post: first, if you need support, you need support. There is no getting around this. Sometimes you need to ask a friend to stop talking for a minute and try to imagine being in your shoes. It might seem nasty and rude to do, but tell your well-meaning friend who is going on about how a magic bracelet she saw on an infomercial will change your life to stop talking. She is not helping anyone. Chances are she is already aware that you need support and perhaps she doesn’t think she can provide that support or is afraid she will fail you as a friend. She might very well be purposefully avoiding the conversation all together, but not because she doesn’t care. And second, if you know someone who has an invisible illness, sometimes the best thing you can do is listen. I often find that I don’t need advice nearly as much as I just need a friend to talk to and who will validate what I am going through. Or sometimes just someone to sit in silence with. Sometimes it helps to get my worries off my chest and just sit in silence with someone. Company is a wonderful things and silence doesn’t always have to be empty. The trick to it all is talking and listening, even when the things we are saying are uncomfortable or difficult. That is what friends are for. With a good friend, we can say the things we don't normally talk about. And if someone is never willing to hear how you are really doing, they probably are not that good of a friend to being with. Sometimes there are things just need to be talked about, and you shouldn't shy away from that for fear of upsetting others with your reality or showing that your aren not brave all the time.
So anyways, after all those words (and I applaud you if you made it this far), I think that the things we normally don't talk about should be talked about a bit more. We would probably be surprised how many people have the same feelings/fears/worries and how much better and more supported we would all feel if we were more open with one another and less afraid of other people seeing us as weak. We can't force other people to listen to what we have to say, nor should we, and I don't know exactly how to make other people more aware of the importance of being supportive and listening. But I do think it is extremely important for us individually to know what things we reallyneed to talk about sometimes (and often ignore or purposefully dimiss) and to try to bring them up in conversations. It will quickly be evident who actually cares/is willing to listen, and those people are likely the ones who you can rely on as true friends and sources of support (and vice versa).
