It’s true once you’re diagnosed with a chronic illness or a multitude of chronic illnesses your life changes. Not just simply Your Health either. Your social changes dramatically. It seems like your friends start dropping like flies. Some can’t stand the sight or the thought of you being chronically ill. While others can’t be bothered with your “flakiness,” and don’t understand why you can’t make plans in advance or why you will cancel at the last minute. But with a chronic illness those things are just part of it. I may feel great today and the idea of a concert or a night out in three weeks sounds fantastic, but there is no way for me to know how I will feel that day! And it’s not that I am being flaky! I just don’t know what my crazy body will do!
Over the years since diagnosis I, like many just like me, have lost friends. Not all at once. But one by one. People I considered my best friends or thought I would be life long friends with just walked away for reasons unknown or because they couldn’t handle what’s was going on in my life. I get it. It’s hard to see someone change so much and have no control of what their body will do next. The hardest part of all that for me is that these were the people I neded the most. The people who I leaned on when times were tough.
I decided to take a survey of a support group on Facebook. I asked them how many of them still have more than three friends from the years pre-diagnosis. Of the 13 who responded only TWO said that this was still the case. The other 11 stated that they no longer have have three or more friends prior to diagnosis. And the following comments were left:
-It’s true though, it becomes so hard. Although I’ve learned it isn’t all to do with the Lupus anymore. Now I’m *that* friend that is busy every day and every weekend and can’t find time to eat lunch with friends.
-My husband is my best friend, and literally my only close friend. I tend to lose touch with friends because I’m “flaky” when it comes to plans thanks to Lupus. We don’t really fight, just people tend to stop making plans that will likely fall through.
I don’t know what I would do without my friends, people who have known me since college, we’re talking 30 years. They’ve been with me through everything and now this.
-I have 2 very close friends and some acquaintances. I generally am with my family only and only 1 of my 2 friends. I cannot make plans that are long term because I guarantee that I will be there. My body does not afford me that luxury. I have lost friends due to this. It is difficult and can be lonely. I am so thankful for my family otherwise I would be alone a great deal. I cannot drive anymore so that is further isolating. Chronic diseases have taken a great deal of my social life since I can’t drive and make long-term plans and often cancel plans that I have made. I have multiple autoimmune disorders as do many of us and this makes it even more difficult.
-My really close friends are my husband, my sister in law and a lady that I met on FB after I was diagnosed… I don’t have any friends that I am still close to from before I was diagnosed, because they couldn’t handle my being sick all the time… ? -My closest friends have came after my diagnosis. People that I thought were my best friends before lupus have turned out not to be suck great friends. I have a few that I still talk too, but even with them I feel super guilty when I either won’t make plans or have to cancel 🙁
I do consider myself lucky however as I do have a couple of really awesome friends here locally who are so good to me. They come and visit me in hospital, they check in on me routinely. And even spend their time taking me to drs appointments, Infusion’s, and spending hours in the ER with me! I can’t thank them enough. However, some of my best friends are people who I’ve met through my support group!! Not only are they great people but they totally understand what I am going through and don’t make me feel bad for it! I may never get the chance to meet them in person but I will be forever grateful for their friendship.
So I guess the takeaway in this is that sadly most people don’t understand chronic illness or don’t want to take the time to. People also will often walk away when things get tough. It seems it is just human nature. Not to generalize but I’ve seen it happen too many times as a nurse. People get sick and their friends and family don’t know how to deal with it. So for them it’s easier to just walk away then it is to deal. I wish it wasn’t that way but it just seems to be that way. I hope for you this is not something you experience. But if it is know you are not alone. And there are a ton of support groups where you can not only find support but friendship in those who understand you and your Life.
Glad I was one that you actually got to meet in person. Love you!! Love this article it really sadly is the case 🙁