If you’ve been following me for a while, you may know that I have mentioned my struggles with chronic illness, particularly since 2014. Over the last few years, I’ve been taking more active steps towards recovery and actually quit my job this time last year to be able to focus on this more. I’ve learnt a lot along the way, and wanted to share a few things that I wish I’d known way back when I first realised there was something wrong and hopefully it can be of use to other people in this position.
The reason I’ve said this is worth reading even if you aren’t sick is that it’s highly likely you know someone who has or has had an unexplained disease (Chronic Fatigue, Fibromyalgia, Lyme disease, Lupus, MS and so many more) or an issue that they just can’t figure out. As they are all such under-researched areas, people who are “lucky” enough to get a diagnosis (most get told they are crazy) are left with such a bleak, hopeless outlook that they end up living most of their lives at 50% instead of the 100% we are meant to, or as close to this as possible. If you know of someone like this, I want you to help them believe that there are other options than just taking medication your whole life to “manage” your symptoms and whilst I have not recovered myself, I have done enough reading to know that you can heal from almost anything, despite what western medicine and your local GP will tell you. Force them to look at alternative routes, to keep on looking, educating themselves and most crucially, believing that it will work out in the end. Feel free to tell them to email me and I will reply with any advice I can give, I am by no means an expert but I certainly will be able able to offer alternative solutions to their current plight and therefore hopefully help set them off on their own route to recovery.
So, these are the 5 things I wish I’d have known when I first got sick:
1. Don’t take no for an answer.
I spent my childhood and early adulthood believing that all Doctors are superhuman and took whatever they said as gospel. In my mind, they were magical beings who just made you better with a pill or an injection. However, at the first sign of me having something unexplainably wrong with me, I was met with a wall of doubt and Doctors just believing I was a bit crazy, trying to convince me it was “all in my head”. I received comments like “sometimes things are wrong with people and they just need to live with it”, “I think you might just be a bit anxious”. After years of resenting these Doctors, I have now realised that it isn’t their fault, the system is just inherently broken and flawed, and whilst they are incredibly skilled and and knowledgable in so many areas, most of them aren’t educated or trained to deal with these kind of issues. They will do a set of testing and ask a set of questions in your 5 minute allotted time and if it doesn’t fit within the normal parameters of what they are used to or have been taught, you are passed fit and told “it will pass”. When it doesn’t pass, then you are put into a certain category of people who look and seem healthy on the outside, and therefore any “illness” must be in their head. More often than not, their solution to this is to remedy the symptoms through medication which, at best, only serves to mask the issues – and can even exacerbate them. The above may come accross negative but I’m actually saying this because like most people, I wasted a lot of time and energy going down ‘conventional’ western medicine routes, and it was actually only when I started exploring the world of other options, that I found there was a lot more promise and potential for my recovery.
As I said before, ‘anxiety’ is often one of those vague labels put on physical symptoms that are harder to diagnose, and I was even put on antidepressents at one point to treat this supposed ‘anxiety.’ and of course, nothin improved as this was no way the issue. Deep down I knew this was the case – my symptoms were very much physical, real and dehabilitating – and I was no more anxious than your average person. After finally rejecting this as a supposed solution, I carried on my search of an answer and thank god I did, because after years of doctors telling me there was nothing wrong, blood tests confirmed that there was. I fully believe that if I’d continued down the traditional route, I’d have regressed and be in a far worse position than I am now.
2. Educate yourself and make connections
Google is a nasty place to self-diagnose, so I’d advise against doing this. If you type in, numbness, weakness, nerve pain, joint paint, aching glands etc into google, you will find a while host of scary potential issues you could have and then you end up making things worse. My advice is to do your own research as to how you can heal yourself – I have read book after book about how the body can heal itself through diet and supplements and this is where I would suggest beginning to look. I know it’s difficult because it’s tempting to believe that a pill is a quick fix option, but with chronic illness (again in my opinion) this isn’t the way to go. Your body is telling you something is wrong and needs to to change, and so you need to find out what these changes are in order to get better. I have read a lot of books on the subject but one that make so much sense to me is the Medical Medium by Anthony Williams. In this book, he explains the root cause of a number of mystery illnesses and provides with practical advice and a clear plan for recovery and so if you’re looking for a starting point, this would be where I would begin.
Another way to educate yourself is to try and speak to others in your situation. I didn’t know anyone with similar issues to me and so it could sometimes feel incredibly lonely. Even if people knew that I was having health issues, they couldn’t ever fully understand because I looked completely healthy on the outside and was doing pretty much everything I always had done, although mostly struggling through it all. It was just over 2 years ago that I began joining groups on Facebook and tried looking for people who had recovered from chronic illness to find out how they had done it. It was at this point that I realised the large majority of people who recovered, did it 1. through their own work and determination and 2. through natural means, and so for me, I made the decision to commit to exploring these routes more, and I now know that this is how I will make a full recovery.
3. Don’t ever think your situation is beyond repair
Like anyone with a chronic illness, I have had some dark moments, yearning for my old life and believing that my life as I knew it was pretty much over. I used to think about how I wouldn’t be able to play sport, work full-time, go out with my friends, have kids or even just do day-to-day tasks. As I’ve mentioned, it’s a pretty lonely existence because as close as you are to someone, they can never truly understand what you go through 24/7 but you know what, that’s ok. Everyone has their own stuff they need to work through and this is what I need to work through, there are plenty of people in the world with far greater issues than I have. I will come out of this a stronger person mentally and physically and for that I am grateful and it’s important that you try to think in this way, as it will make a massive positive difference in your life.
I have done enough reading to know that it’s possible to recover from ANYTHING and I’m too stubborn to let something like this beat me and so I made the decision that no matter how down or hopeless I feel, I will pick myself up and keep going until I am fully recovered. If I hadn’t had gotten sick, I would never have looked into meditation/mindfulness, changed my diet and left my job. Whilst at the moment, I’m not yet recovered, the upside of this illness is that it has slowed me down and is making me a better person and for that I am grateful.
Whilst it might not be tomorrow, next week, next month or even next year, I know I will fully recover at some point, and anyone in my position, my suggestion is to hold on to this positivity too as this is half the battle.
4. Share your situation with others but don’t allow yourself to become a victim
For years, I didn’t tell anyone that there was anything wrong with me. I would mention it to my mum and dad but other than that, I kept it bottled up and keep visiting doctor after doctor, hoping to get better in the background whilst I continued to attempt to live a “normal” life. For the first two years of mine and Sophie’s relationship, she didn’t know anything was wrong and it was only at the point I went to Germany for IV antibiotic treatment that I had to tell her everything. Because I couldn’t explain to myself what was wrong with me, how could I explain this to others? Over the last 3 years, I have told more and more people and whilst it makes me cringe and I hate talking about it (and writing this blog is pushing me to my limits…!) it does feel better people knowing than not. It’s actually important to share what’s going on so that friends & family can understand as much as they possibly can.
That said, for me (and this might be different for you), I try to limit the amount I negatively vent about it to others. I have found that no matter how much I tell someone how bad I feel or the specific terrible symptoms I am going through that day, it won’t make the slightest difference in how I feel. In fact, it can actually make me feel worse because I tend to then dwell on my symptoms and start to think of myself as a sick person and feel sorry for myself. For me personally, this only serves to make me feel worse and regress and so whilst I now don’t suppress how I’m feeling, when I do talk about it, I try to ensure it’s in a positive manner.
5. Don’t put your life on hold
When you have an illness with no expiry date, there’s the temptation to subconsciously put off living your life until you are better. You don’t go for that work opportunity because you are sick, you won’t push yourself because you’re scared of getting worse, you lose touch with people because you can’t do what you did before with them etc etc.
There was a while when I was saying things like “when I’m better, I’ll do this…” or “I can’t wait until I’m better because…” and so my life was pretty much on hold until I was at 100%. It was only when I realised that the interim part could be just as enjoyable as long as I gave myself a purpose and a challenge, and stopped putting things off “until I’m better”. I realise everyone is different and you might be thinking “I can’t even get out of bed at the moment” but my advice would be to push yourself beyond what you’re comfortable with, if only one day a week, then two days a week and then build from there. If you feel terrible when you push things, ask yourself, how much worse do you feel and is this extra bit of pain, tiredness etc worth the positive feeling you get from completing or attempting the challenge?
For example, after a long period of not working out or running etc, I am now building myself back up and my goal is to be as fit as I was a few years ago. I have days where I barely feel like walking let along running and so whilst I don’t feel amazing physically afterwards, the sense of achievement I have is worth any negative physical feeling. Also usually, I rarely feel that much worse the next day than if I hadn’t exercised so it tends to be 100% worth it all! People say “listen to your body” but sometimes you have to pay attention to what motivates you and makes you happy too, and try to integrate that into your life. Don’t wait until you’re recovered, don’t put your life on hold!