"Get Well Soon" ~ MEA Article

A couple of weeks ago I wrote a piece for the M.E Association {MEA} website all about the phrase "Get Well Soon" & how it can affect my mental health in relation to living with M.E, where the possibility of getting well soon doesn't really exist. It went live on their site on Friday & you can click here to read it.

I was incredibly anxious about how the piece would be viewed as it's probably the most open & honest piece of writing I've done in quite a while, even more so than any piece I've written for here & as someone who doesn't opened up often, it was scary to put myself out there but I felt it was important to do so.

The reaction I received was very mixed & a number of comments didn't take kindly to my honesty. Although I don't dwell on the worse parts of having M.E, I do feel having a realistic view of your health is so important. Doing so doesn't mean you're negative, you can be realistic & still be a positive person. Having a realistic outlook purely means that you're truthfully acknowledging the limits the illness you have is putting on your body & you're learning to create a new life within those limits. For me that is vital as I spent many years ignoring symptoms I now know are part of M.E & doing so has left me housebound/bedbound.

Being realistic also doesn't mean you live with no hope of ever getting better; hope is the reason I am still here today. I had a period {about 6 months after diagnosis} where I lost hope & it was an incredibly dark time, I was disappointed every morning because I had woken up, I didn't want to live anymore. My mental state wasn't good & it took me a long time to gain my hope again & part of that was to acknowledge just how sick I was. That mental shift helped me to become my naturally positive self again & slowly learn how to live life with M.E after I'd watched my previous life fall apart.

Six years on from my M.E diagnosis, to come across the "Get Well Soon" cards that sparked the article, hit me harder than I thought they would & harder than they did at the time. Back then {first month or so after diagnosis} I was still in the "M.E isn't going to change my life, I can think myself better, I can beat this" toxic positivity mind set stage, which pushed me into making my health even worse! Now looking at them, although I was grateful I had received them, I felt so sad that I wasn't well, I hadn't accomplished what the cards were hoping.

It then made me think about the fact that, although the intention is lovely & greatly appreciated, the phrase "Get Well Soon" really is inappropriate when the person receiving the card is chronically ill ~ chronic means lifelong, no getting well soon. So I began writing out my thoughts & decided to run the idea past one of my contacts at the MEA, who thought many would be able to relate to it & a lot did.

But as with anything you put out on the Internet, there was a number of comments that decided to take a negative view of my very open & honest thoughts on this subject & passing judgement on me. People with M.E receive a lot of judgement from people outside of the community, a lot of which stems from a serious lack of understanding. However, I find it incredibly sad when that judgement is coming from people who are supposed to be living with the same condition as yourself & are supposed to be understand what life is like with M.E. We shouldn't be turning on each other just because how one person chooses to deal with their condition differs from our own & our thoughts on a certain topic differ with our own. We need to support one another, not tear the person down for being truthful about their feelings at that moment in time.

Having a chronic illness like M.E, isn't all sunshine & rainbows every day & it's good to acknowledge that, it's even necessary at times. These negative judgements when someone chooses to open up about an aspect of life with M.E could lead to a person never sharing with anyone ever again & that in turn will have a serious affect on their mental & physical health!

It's like walking in to a Doctors office all smiles pretending nothing is wrong ~ that isn't going to help you & the Doctor will wonder why you're even there! Instead, you tell the Doctor honestly about everything that is going on, how you're really feeling, what symptoms you have & it's only with a realistic view of your condition that the Doctor can hopefully then try to help the best they can, order the right test, give you a right diagnosis or refer you to a specialist.

By Friday afternoon I felt like I should never have written the article {which for some reason has been shared again today} & had to back away from the comments as the judgements & toxic positivity were becoming too much. I have had a lot to deal with health-wise over the past few months & those comments were the final straw! I certainly wasn't expecting everyone to love the piece, I mean that is unrealistic when we live in an age where negative comments on the Internet occur by the second!

As the day went on, I reminded myself that I cannot control other peoples reactions, but I can control mine. So remembering that the few negative people making judgements & assumptions about me don't know me personally or my full situation ~ they simply do not matter. The people who matter are the ones that do know me & know how I don't open up often. They had thanked me for being so honest regarding the subject as they felt the same way & therefore didn't feel alone in their thoughts.

The main point of writing the piece was to acknowledge how this message made me feel & hope that it would resonate with others, making them feel less alone. It was also to maybe highlight to any healthy people reading it that sending someone you know with a chronic illness a "Get Well Soon" card isn't really appropriate & can have a negative impact on their mental health.

While your intention is a lovely one, a simple letter or card, without "Get Well Soon" on it, letting the person know you are thinking of them is far more caring & comforting. It will also make them feel less isolated & alone as so many of us find that the longer we are ill, the more people stop staying in contact or inviting us places. {Something I didn't mention was that I acknowledged the cards at the time I got them but many of them were from people I no longer hear from.} Even just a short text message can go a long way to making a day living with chronic illness a little better.

As a community, we need to band together & support each other, to stop the toxic positivity, not make judgements because someone is being honest about a certain aspect of life with M.E that may not go along with your own thoughts. We need each other & we need to encourage one another to be open about our experiences because for a great number of us, life with M.E is extremely lonely & we need the care & support of those who are supposed to understand. In all honesty, if those outside the community see us treat each other this way, then they'll think it's okay too, when it really isn't.

Kindness is free, we need more of it in the world & we especially need more of it within the Chronic Illness / M.E Community.

Take care,

L x


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