Life happens. I mean let’s be honest, not everything is always going to go the way we hoped it would.  At a young age most of us are forced to come to terms with the fact that plans change, people change and sometimes you just have to go with the flow.  In fact, having the ability to ebb and flow with life can be very beneficial in just about every aspect of life. Sadly, very few people seem to possess that trait. Few people have the ability to understand that sometimes plans get altered and are in-fact out of our control. However, through the years we have seen changes in our support system. In high-school when things changed and weren’t the “cool” girl anymore and you lost your best friend. Or in college when your best friend got engaged senior year, married right after graduation and then started their family.  Or even worse, when you get diagnosed with a chronic illness. 

The day you get the diagnosis of a chronic condition your life changes. Yes, I know that sounds super dramatic, but it’s true, once you’re diagnosed with a chronic illness or a multitude of chronic illnesses your life changes. And I don’t mean just the obvious.  I am talking about the changes that come in your social life. When you are first diagnosed your friends have all kinds of questions and they want to know everything. And they vow that they will be there by your side to fight the monster NO MATTER WHAT. Until……… Until they aren’t and then it seems like your friends start dropping like flies. Some will say they aren’t coming around as often because they can’t stand the sight or the thought of you suffering. Which for some might be valid. But I’m NOT DYING. I am not in the hospital, we can still hang out. 

While others can’t be bothered with your newfound “flakiness.” They don’t understand why you can’t make plans days or weeks in advance but have no problem when they need to cancel at the last minute.  No matter how many times you try to explain that it’s just the nature of the illness. You don’t know how you will feel in an hour much less a few days, a week or even a month. 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 and thought would be life long friends with just walked away for reasons unknown to me. Or the ones who have given a reason always give something stupid like 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 over what their body will do next. Sadly, when those changes are happening is when we need that support the most. The hardest part of all that for me is that these were the people I needed the most, and were who I leaned on when times were tough. And they just up and walked away without so much as a look in the rearview mirror.

In 2017 I decided to take a survey of those in my support group on Facebook. I asked how many of them have more than three friends from the years prior to any chronic illness diagnosis. Of the 13 who responded only TWO said that that was still the case. The other 11 stated that they no longer have three or more friends from prior to diagnosis. The ladies wanted to share these comments:

-“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 come from after my diagnosis. People that I thought were my best friends before lupus have turned out not to be such 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 :(“

Overall, I do consider myself lucky as I do have a handful of really awesome local friends who are so good to me. They come and visit me in hospital, they check in on me routinely. And even spend their free time taking me to Drs appointments, Infusion’s, and spending LONG hours in the ER with me!  I can’t thank them enough. However, most 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. I won’t say that I haven’t been burned in the past because I have. Several people who I thought would be in my life forever decided to walk away because they could handle Me being sick. Whatever that means. But my best friend of all is my Mother, she is with me no matter what happens. She takes my hateful attitude and grouchiness in stride knowing that for the most part, it is due to being sick. This woman truly deserves a medal of honor for all the sitting and taking care of me she has done. She is a great momma and a great friend. That being said, as weird as this sounds in some slightly twisted way I am thankful for Lupus because without it I would have never found my tribe.  

The takeaway from all of this is that sadly most people don’t understand chronic illness or what it’s like to live with it. Nor do they want to take the time to. People also will often walk away when things get tough. It seems it is just human nature, it happens in all parts of life not just chronic illness. When things get hard, walk away. It’s the easy way out. 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 than it is to deal. I wish it wasn’t that way but it just seems to be a coping mechanism that people chose to use more often than they should. I hope for you reading this that this is not something that you ever experience. But if you do, please know you are not alone. Chances are their choice to leave had more to do with their inablity to cope than it did with anything you had going on. There are a ton of support groups out there, both online and in-person, where you can not only find support but friendship in those who understand you, your health and your occasional flakiness.  

You may or may not have noticed, but a piece or two ago I started ending my pieces with a call to action(CTA), which will continue for a while. At the end of each piece you will find a CTA encouraging you to do something. Some may encourage you to step out of your comfort zone a little, like the one today, while others may encourage you to reflect and work on yourself. I hope you enjoy these, and I also would LOVE FOR YOU TO LEAVE ME A COMMENT BELOW EACH PIECE LETTING ME KNOW YOU ARE DOING THE CTA, AND HOW IT TURNED OUT. If it is a more personal CTA I would never expect you to post your results unless you want to. I am also doing this as a way to grow our community!!!!!

• In Today’s Call To Action (CTA) I encourage you to reach out to one person who you really miss talking to.  Reach out and just see if they would be willing to talk. I will be doing the same thing. I would love for you to report back in the comments below how it goes for you!   I will also be letting you all know how mine goes!!!

With Love,

Amber