From Us to You- a message to friends and family

Being diagnosed with multiple medical/pain/auto-immune conditions has changed my life in so many ways, I cannot possibly even begin to describe them all. One of the hardest parts has been gaining acceptance from those around me (acceptance for my conditions… not me), because they knew me before I was “sick”. But the truth is that I’ve always been sick, it’s just that my symptoms were not as bad and have gotten progressively worse as I’ve gotten older. I look back at my childhood and it is so obvious to me that I can’t imagine how any doctor could not have seen it, but I know better than to play the “what if” game. Some people do their best to be supportive, I know that. It can be practically impossible for someone who doesn’t go through this pain to understand the toll that sort of “support” can take on a person. Thus, this letter to the world. It’s not directed at any one person… REALLY! There are going to be some people that will assume I’m pointing fingers, but I’m here to assure you that you’re not the only one that does it! Let’s break it down by the type of supporters those of us with chronic illness often see.      

          • The Doubting Thomas – No matter HOW many articles you post, or how many times you’ve explained your condition, there’s that one person that thinks it’s all just environmental (or some other excuse) and doesn’t think anything is really wrong with you. They’re not being supportive, at all. They think they’re being positive, but all it does is eat away at your already hurting emotions. Don’t. Let Them.

           • The Health Nut – They always have a new recipe or vitamin to suggest, or even give to you in some cases. They tell you that all your problems would be solved if you would just exercise, and they’ll even recommend this/that to get you started. What       they may not realize is that, if it actually helped you… you would try it! You REALLY would! But you have a doctor for a reason, multiple doctors! You know you need to work-out more, obviously. You also need to eat better (who doesn’t), but if drinking a shake cured ________ it would be front page news, for real. So, if my doctor wants me to do anything besides what I’m already doing (which YES includes working out, when I am physically able to), I will do that.

           • The Prayer Warrior – No matter what your belief is on prayer, I don’t know of anyone that turns it down. With that being said, for many people it is the “go to”   answer for everything. (On a personal note- I pray, all the time. That doesn’t mean     this is any more or less important to me.) When people are in constant pain or sick    ALL the TIME, it may seem like a comfort to say “I’m praying for you”. After a while it gets VERY old! Thank you for praying, really. But I honestly don’t need the constant      reminder that nothing is happening to change my situation. Obviously this is no one’s intention, and for those doing the praying, please keep it up (we need all we can get). There comes a point when even the most devout among us begin to doubt, and having those reminders staring us in the face can push us over the edge. For those that struggle with faith or do not believe, it can be like a knife that cuts deep. Every time.

           • The Grass is Always Ugly – Some people have a tendency to point out how much worse everyone else’s life is. If you complain (about anything at all), they bring up some world event that “brings everything into perspective”. It’s true, our lives could be worse! But it does NOT devalue our pain! You are important and so is what you    are going through! We are not in a contest with the rest of the world to find out who is having the worst the day. Because, guess what? No one wins! If a friend doesn’t allow you to vent or explain your pain without comparing it to something else, they don’t really understand what you’re going through and need more information.

           • The Amateur MD – The opposite of the doubting Thomas, this is the friend/family member that won’t stop sending you articles/stories about people with your illness. They’ll ask “have you asked your doctor about this medication?” or “what has your doctor said about this/that?” and so on. Obviously this person means well! And of all the supporters so far, they are trying the hardest to truly be there for us. But please stop! This is not the way to do it. Most of the time people with chronic illness spend a    LOT of time on-line researching their condition, it’s one of the things that helps (sometimes) before office visits, etc. So it’s very rare that there’s anything anyone can show us that we don’t already know about. Plus, asking us if our doctor is doing something for us is just questioning our doctor’s competency, that’s our job.

           • The Tried & True – The people who are there, no matter what. Through thick and thin, hell or high water. They don’t care how much you complain, they’ll listen (and will probably vent about something as well). These are probably people who have been friends for years and have seen you at your worst. They know what your pain has done to you, and don’t care if it means you can’t spend as much time with them    anymore. Be very careful!!!! As much as you may lean on this friend, if they are your ONLY means of venting, it can eventually weigh heavy on anyone. Ask them how   they’re doing on a regular basis, it can be really easy for people with a serious illness to forget to do this!

           • The On-Line Support – Thanks to social media we now have a whole (literal) world of support available to us. This can be an amazing comfort for some, and extremely lonely for others. Whether you’re on-line for information, or to make friends, these groups are a great way to connect with others in similar situations to your own (and highly recommended). Invite family members and friends, get them involved!

           • The Jekyll & Hyde – Not everyone you know will belong to just one of these lists. Many people will actually be on several of them! But if as you were reading this, you were thinking of someone/anyone… this is worth sharing.  

In conclusion, I would like to speak directly to the friends and family reading this. All we want is support. This doesn’t mean advice, it doesn’t mean doubt, or someone behind us (pushing us to do or be better). We need someone to tell us they’re there for us. Someone to say everything is going to be, even if we all know it isn’t. Someone that will allow me to cry, and feel free to cry with me. Someone who won’t judge me if I have to cancel our plans, because it’s going to happen… a lot. Someone to love me, no matter what.

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