01/06/2020
For the first post, I thought it would be best to attempt start at the beginning, (which is also definitely not the beginning really, but the beginning of the āthingā Iād been struggling with for 10+ years having a name...)
Multiple Sclerosis.
Iāve been thinking a lot about what advice I would have given myself back then, in the weeks and months following my diagnosis - knowing all that I know now...
I saw a random post on Instagram a few days after I was discharged from my week hospital stint/diagnosis, and she seemed so at peace and positive with it all. I remember lying in the bed at my dads, feeling the most poorly, and the most scared I had ever been in my 29 years thus far, pleading with the universe that I too would feel similarly after my first year.
I didnāt. lol.
Which brings me to my first point...
There is no time limit on your grief. Nor is there a ārightā way to grieve. If you are newly diagnosed, (and even if youāve been diagnosed for 20 years), you are allowed to be heartbroken, you are allowed to be devastated, you are allowed to be utterly terrified, and you are allowed to express that. Sitting in my hospital bed, with half of my face dropped, unable to use one side of my body, unable to speak, or think clearly, I was having a silent sob to myself. A nurse came over and told me to ācheer upā and I should ācount myself lucky because itās not terminalā. This type of toxic positivity will be thrown at you left right and centre, by people who will never understand. People will flippantly say āstay positiveā, because 1. Itās a lot easier for a healthy happy person to ājust be positiveā, and 2. It makes others uncomfortable. That is on THEM, not you, and always remember, youāre not responsible for how other people feel about YOUR illness.
In that moment in the hospital I felt extreme guilt - now I will not allow people to tell me how I āshouldā feel about anything. Expressing your emotions is healthy and brave, especially expressing emotion off the back of any kind of serious trauma. Dealing with it and processing it, without pretending itās not a thing, will see you well as time goes on.
Advocate hard for yourself. If you have been diagnosed with MS the chances are various doctors have been giving you the run around for a while. If youāre young and ālookā well, this will likely have been even worse for you. It is not ok to be ignored. It is not ok for you to be suffering with no answers. It is not ok for symptom upon symptom to be put down to ājust your mental healthā. Itās not ok for you to be gaslighted by medical professionals, (this STILL happens to me now despite having MRIs literally covered in various white splodges). In the years running up to diagnosis, and when I was first diagnosed I didnāt dare speak up, or disagree, with medical professionals. Now I know this is crucial. Chase things up, tell doctors what you want and need. Your lived experience is real and you deserve to been seen and heard.
Do your own in-depth research. I see a lot of mixed messages about this subject - generally other pwMS urging newly diagnosed folk to stay away from google. Whilst I completely agree that the weeks and months following my diagnosis were not the time to be scaring myself unnecessarily, (I refused to look at anything at the time whatsoever), when you feel ready, read. Watch videos. Educate yourself on our illness, what is ACTUALLY is, how it works and the real and serious implications it brings with it, (this is really tough and scary, but personally it helped me, knowing what I was truly dealing with). It also means that you are able to question things from an informed place if you ever need to. It pains me that for a lot of pwMS, they receive what I call āthe leafletā, with a list of reallllllly general symptoms, are sent away, and left to make sense of something that doesnāt make any sense at all. The sensation of water being poured all over my body, my face dropping, how much my āhealthā can vary so drastically day to day, the sensation of one leg being huge in comparison to the other... These are just a minuscule amount of things that are definitely not mentioned in āthe leafletā.
Donāt ever take on any guilt over your own unique version of our illness. I was told by an MS nurse that, āmost people with MS live ānormalā lives and work and carry on like ānormalā. Then thereās me sitting there with so many debilitating symptoms, feeling so poorly, thinking ā???????ā. Iām now 31 years old and Iām in the process of coming to terms with the fact I will likely never live a ānormalā life again. There is a lot of pressure put on us to ācarry onā, (which we bluddy do anyway fyi people), but that day I felt like I was failing, or ānot trying hardā enough, because what she was saying to me didnāt fit with my lived reality. How poorly you are is not your fault, despite how young you are, or how fit and heathy you may appear, donāt feel pressured to play your symptoms or your struggles down.
People will turn their back on you. I find this one funny, because I would initially read other people saying this and smugly think to myself, my friends would never do that... but I learnt fairly quickly, they can and they will. This sounds like a negative, when really itās just damaging people removing themselves from your life, and saving you the trouble. It hurts, it makes no sense, but on the flip side you will develop deeper relationships with the people around you that really do genuinely love and support you. Some of the people around you will not have the emotional capacity to deal with you being perma-sick, and again, this is NOT your fault, (can you see a running theme here š¤š).
Strangers from the internet will lift you up and help you in your darkest moments. The people that love you are fantastic support of course, but there is nothing more cathartic than spilling your heart out to someone that truly āgets itā on a level the people around you cannot. Network, reach out to individuals in the MS community, make friends, ask questions. There is no better person to tell you about our illness than someone who is living it. This was one of the best things I ever did and I now have life long friends because of it.
I was diagnosed mid-worst relapse Iāve ever had in my life. Iād been having them for years, but the relapses of 2019 were particularly vicious, and for a long time seemed completely unrelenting. When in a relapse we have the fear that things will never improve, but I beg that the chance they might keeps you going, because they likeliness is, they will in some form or another. Thatās not me saying things will āgo back to how they were beforeā, or āeverything will just be magically made betterā - because they wonāt, and it wonāt. Thatās not me saying physically, certain things will 100% definitely improve, because those things, sadly, might not resolve completely, if at all. Again, this is in no way your fault - but you will have periods of time when you feel better [than youāve been feeling]. It feels like those times will never come in the moment, and the mental battles that come with our physical illness are incomprehensible, but what Iām basically trying to say is, wherever you are, things do have the ability and potential to improve, no matter how slight, even if itās from purely a mental standpoint.
There is no cure for our illness. This seems like an obvious one, but one of the first things I did when I was first diagnosed, in true Katt Snelson style, was to buy a book. The OMS book to be exact. I was convinced I was going to be symptom free if I followed what the book was telling me, and Iād live happily ever after. A few months in I realised that, the book wasnāt actually based on any SOLID science, and the people I was aware of in the community following the diet at the time, were still relapsing. It was not a ācureā and you cannot ārecoverā from multiple sclerosis, no matter what anyone tells you. That said, lifestyle and nutrition changes do HELP, and I will go into more detail, and break down some of the more popular āMS dietsā in future. Iām an evidence based practitioner, which means I work with facts and evidence, however around my diagnosis I needed that hope, and itās normal, and human nature, to seek resolution and answers for things that are scary and not ok for us. You will also get plenty of unsolicited advice from many people that DONT have our illness. I used to politely grit my teeth, and nod and smile, as if somehow me telling the person talking at me that they were wrong, would be insulting and/or hurtful to THEM š¤¦š»āāļø. You donāt have to listen, itās insulting and hurtful that they feel itās acceptable to talk so brazenly on such a topic they know nothing about. And no I will not be drinking my own urine, (apparently this will cleanse and cure me š, genuine āadviceā I was given by a complete stranger), their ignorance is not on you, have the strength to call them out on it, and if you donāt feel you can, remove yourself from the situation. You donāt have to, or need to, put yourself through that.
Everyoneās MS is different. Again another obvious and very common one I hear all the time, but as you move forwards on your own journey you will really learn this for yourself. It is the broadest spectrum, with such a vast variety of symptoms, and affects people in such an individual way. Take the time to speak to others and learn about THEIR MS, but also rest assured knowing that how YOU choose to deal with YOUR version is the right way, comparison isnāt needed.
I wonāt beat around the bush - youāre in for a wild ride, things will be different, difficult and scary. You will feel lost, alone, confused and sometimes want to give up altogether. Just please remember you are not alone in your feelings and struggles, ever. Even when it sometimes feels that way. The MS community is here for you. WhatMS is here for you. Despite it all, in time, you will get to know your MS very well (although it does love a curve ball š), you will learn what it means for YOU personally, and you will develop coping strategies that will carry you through. Confession - when I was first diagnosed I cringed at the term āMS warriorā - now I really realise that we really fu***ng are. Warriors. Fighters. And we should just be so ridiculously proud of ourselves every single day.
and I, will be discussing everything ādiagnosisā, including our own individual diagnosis stories, on our first whatMS podcast. If you have any questions, or anything youād like us to cover, please dont hesitate to DM āŗļø
What would you want to tell your past self, knowing what you know now? š¤š§”šš¼
