When I first got sick I received a hard and fast lesson on the people in my life who were actually fair weather friends. My vast and varied social life quickly dwindled down to a small handful of people that stood by me even though “I had changed.” In a way they were right, I did change, my whole life was turned upside down in a very traumatic way. There was no way to survive that without changing. When the chronic pain first began, just like everyone else, I expected to get better and get on with my life, but as the days turned into months and the months into years it became glaringly apparent that a cure just wasn’t in the cards. There was a lot of heartbreak involved in this realization. Though I fought long and hard to keep the life I had worked long and hard to achieve my body failed me and mentally this was immensely hard to absorb. Equally hard to absorb was the loss of the people in my life who I believed were real friends, but instead lashed out at me. They blamed me for my illness, they criticized me for how I coped, judged me for things they didn’t understand, and having done their damage, walked away. I now know this is a very common experience, at the time I was both devastated and confused.
That was about a decade ago, some wounds leave deep scars. I have since been very careful as to who I consider a friend, who I let into my life, who I spend time on, and especially who I trust. Though I write very candidly in this blog, I don’t tend to talk about my illness with anyone. I’m sick, I know it, they know it, if they want to know the details they can ask directly or read about it here. I don’t want to be the one who talks about their health or their problems all the time. I don’t want to be a burden or a bummer. Even if I’m suffering I try to have fun and be good company. I work hard to be a good friend. I’m there whenever I can be. If they needed something I would move mountains to make it happen. I may be stuck on the couch, but I’ve learned to be creative. I make the time and effort to see them, which is even more of a challenge now that I had to move far away. I try to keep in contact, but distance makes it hard. I do whatever I can to make their lives more pleasant. It’s a challenge sometimes, but I do my best to be kind, supportive, empathetic, and helpful to the people who are important in my life. While I don’t expect the same kind of effort in return, love isn’t about keeping a ledger of who did what, I also don’t believe that my illness gives anyone the right to treat me poorly.
Unfortunately, I’ve had some recent experiences that have made me wonder what makes friendship real and what friendship is worth. When I was talking about this with someone they said something very poignant. When it comes to the behavior of friends you have to decide if what they have done is a pain in the ass or a stab in the heart. If you can move what has occurred to a pain in the ass then you can move on with your relationship and eventually get over it, but if what occurred really has hit you where you live maybe it’s time to just move on. When you are chronically ill you are always a little worried that you are being over sensitive, that you are over reacting, or there is a misunderstanding. I’m fully aware that dealing with my illness takes a little more understanding and compassion, but it’s no excuse for bad behavior and that is what I seem to be running into.
Even though I don’t talk about my illness I’m still subject to its limitations. A few recent experiences made me start to wonder if the people in my life really do understand that these limitations are not my choice. One I seem to run into a lot is that I walk slowly. I’m not meandering and taking in the sights, that is the speed that I can walk. If I walk faster my disability becomes very blatant in my gait (which I’m too embarrassed to let anyone see) and I will only make it a short distance and then will not be able to walk anymore. I will also end up in a lot of pain and will have to recover for who knows how long. However, if I walk at a slow steady pace I can walk for a little while. Yet it seems like slowing down enough so I can keep up is quite an inconvenience. Which to me doesn’t seem right, I would happily slow my pace for a friend knowing they didn’t have a choice, I’ve done it for years for my Mom. Yet, people walk away from me all the time and there isn’t a damn thing I can do about it. Sometimes they realize they’ve left me behind and stop and wait until I catch up only to walk off again. Have you ever been walked away from? It sucks. It always makes me want to go home and makes me very cautious about going anywhere with these people again.
Another limitation is activity. I used to be very active, but now every action has a cost and I pay in pain. Not only that, but I have extremely limited energy. So, what a healthy person might consider no activity is actually costing me every minute. I can do things like go to a concert, a movie, a small gathering, out to dinner, or hang out at someone’s house, but I have to mentally and physically prepare for it ahead of time and I pay for it afterward. It would be like a healthy person getting ready for a 48-hour ordeal and then recovering afterward. Again, it’s not a choice, it won’t change if I try harder, get more exercise, sleep more, whatever, the only result if I push too hard is I end up sick for months. Yet, I recently had some friends tell me that our activities, or rather lack thereof, were destructive to their lives, therefore, they decided to cut me out of their lives. Mind you they didn’t tell me as much until I directly asked. They clearly aren’t friends and that’s over, but it really frustrated me that they didn’t just tell me. Again, what I’m seeing is a lack of understanding of the facts of my situation. I got the feeling from these unkind people that they believed if I tried harder I could go out and do whatever I wanted. That they had it in their heads that my “need” to stick to low-key activity was a form of laziness and that they tried to include me in a few activities and because I refused they ended the relationship. I can’t control what other people will or won’t believe. I try my best to educate the people in my life. I explained my situation and pointed them to a few key articles on this blog and they said they got it, but that clearly was not the case. Though it was certainly a painful experience I’m glad they are gone, but I wish that people would just freaking communicate. When did talking go out of style? And why didn’t I get the memo?
I don’t tend to ask for help. I try to organize my life in such a way that I can manage everything on my own. I fully admit I am stoic, independent, and stubborn. However, I do accept help when it is offered in small ways such as lifting something heavy or offering me food or drink when I’m too exhausted to get it myself. I would hope that my friends would help me because it’s a nice thing to do. There shouldn’t be a ledger in any relationship keeping track of who did what when and whose turn it is to do something nice. Real love and kindness are done for kindness sake. The reward is that it feels good to do something nice for another human being. If you are doing something nice looking for something in return then your heart is in the wrong place. Chances are, instead of doing good all you are going to do is build resentment because the other person doesn’t know that you are keeping a tally. If you don’t want to do something then don’t. It’s that simple. Like I said, I don’t tend to ask for help and it is rare I get myself into a situation that I can’t handle myself. If I, or someone in your life with a chronic illness, does ask for help and you give it, but you want or need something in return that you aren’t receiving, then communicate as much. Chances are excellent that they just don’t realize what you need and will happily give it. We aren’t monsters, we are suffering, it makes it hard to be observant, we will be very glad of some straightforward help on what you need from us.
Communication is vitally important for everyone when you are chronically ill. Sometimes we feel a bit crazy, we don’t understand why people are treating us a certain way and we have already been so damaged by our so called loved ones that we suffer PTSD. We need direct communication, we need to be told what is going on and why. Even if it is something we are doing, just being told in a calm, kind manner, so the problem can just be fixed will make all the difference in our confidence in the relationship. Being passive aggressive, being snappish, being grumpy and then denying it, yelling or the silent treatment are all going to do so much more damage than it would to a normal person. Why? Because chances are you’re frustrated with us because of something to do with our illness and that is a giant throbbing red button. We did or didn’t do something and you’re mad or you’re helping and we aren’t appropriately grateful or you miss the old us. Well so do we! Damn it! We are every bit as frustrated as you with the whole situation. Plus a million, plus a ton of doctors who mistreat us and pills that make us feel rotten, not to mention this freaking illness that has torn every shred of our lives to pieces. So if you love us at all, just talk to us, we are absolutely willing to work with you, but we can’t read your minds.
Our friends are important to us, but we often feel like we aren’t understood. We know that you try and that this is hard on everyone. All we’re asking for is some compassion and some communication. We don’t want any special treatment. We just want some common courtesy and some kindness. I don’t feel like I’m asking for too much, but lately, it appears to be a big ask. I don’t understand why. I do the same for my friends in different ways without expecting anything in return. I just like seeing them happy. But I have to wonder, does that really go both ways?