Living with an invisible disease

I don’t even know where to start with describing this one so I’m just going to get straight to it. On the face of it when people look at me; no real skin problems, no scars, no chesty coughs, slim build and no real obvious signs of illness. Internally, I feel the complete opposite.

I have had intestinal/stomach related problems for years but I was still a very sporty and athletic individual throughout my educational life (to my final university year). However, it has unfortunately become worse and is now significantly affecting my standard of living and mental wellbeing.

For roughly 2 years I have had severe stomach pain which probably developed through living away from home in a different city while working for a year. As I was living by myself and being the irresponsible young adult I was, I was unable to cook, and as I was always a slim, people would constantly tell me that I was so lucky that I’m skinny; I can eat anything. Being young and naive, I did just that being totally unaware of my food intolerances/sensitivities; the very things that were harming me. I started developing skin problems, brain fog and frequent migraines. My eyesight deteriorated, experienced severe abdominal pain and I lost considerable weight to the point that I was a mere 6 and a half stone. I lost all confidence in myself to the extent it had an impact on my ability to verbally communicate which I feel is still prevalent to this current day.

I knew I had to do something because every part of my body was shutting down. I couldn’t do the things I previously enjoyed like playing football and going out with friends which left me severely depressed and isolated.

My first point of call was to go to the doctors. After explaining my symptoms and showing the doctors the physical proof of my skin problems, I was extremely surprised to be shrugged off. I was already at breaking point, so I went the next day to see another doctor. After arguing continuously and convincing them to take me seriously, (they just thought I was just extremely anxious and stressed) I notified them I’d like to take serious tests like X-rays etc. The doctors decided to do an overall blood test which will flag up antibodies if there is anything wrong with my body. To my disbelief my results came back all clear. I was told I’m perfectly fine and it’s all in my head, I’m just highly anxious and stressed and thus there was no need for an X-ray so instead they simply recommended anti-depressants!

At this point I walked out the surgery and had a major breakdown, my heart broke as I lost all hope of getting better and lost my will to live. I felt like it was all over; I’ve effectively been given a life sentence that no one will understand. To be honest at that point I wished I had cancer instead. At least it was something tangible. A confirmation that something is not quite right.

Thankfully God blessed me with the courage to open up to a colleague who seemed to genuinely care and tried their best to help as they noticed my mental health was deteriorating. Having someone to confide in made me feel better. It felt like letting off a huge load off my back even though they couldn’t stop the problem itself. Anyone going through any physical or mental related problems alone, I would recommend that you do give people you trust a chance. You will likely be surprised how compassionate people can be and on the plus side, talking about your issues can be a godsend for your mental state. I for one can testify to this. As someone who tries to ensure they live without pride or ego, I can admittedly confess that being open is a real challenge for me. However, its ability to help put your problems, and sometimes irrational thoughts into perspective, is priceless.

I did manage to get better thank god, although not in a recommended manner. I firmly believe praying, drinking lots of water and pot luck helped me get better. I returned to University for my final year with a new lease of energy, sense of excitement in life and getting back to doing things I enjoyed but as I had lost significant weight, (particularly with me being quite skinny already wasn’t necessarily a good thing) my housemates and friends were quite worried.

I fell into the same trap and the cycle repeated itself. The same “you need to put on weight”, “eat this and that” persisted and although I fought it for a while, the repetitive comments about my weight dragged me down to the point where I finally caved. The symptoms returned and this time I still haven’t managed to shake it off.

My mental health has again deteriorated. I have lost confidence, I isolate myself and have stopped going to socials. I find myself pulling away from people I build good bonds with but the thing that hurts the most is that I’m afraid people may think I just don’t like them, not knowing it’s me and the high social anxiety levels I face. I feel like I’m losing out on the so called ‘best years of my life’ and I’m scared I will not be able to fulfil my potential. I’m scared I’m going to let my family down, I’m frightened I won’t be able to build close relationships with people and I’m afraid I won’t ever get better this time. I’m stressed about a lot of things but honestly, I can deal with it. What I can’t deal with is my fears becoming a reality and living like this for the rest of my life.

I’ve learned the importance of being resilient enough to ignore people’s comments over your own inner voice because at the end of the day it is my life and my body and I’m not comprising my life for anyone else. It doesn’t matter if this disease is invisible to other people or not as serious to them. To me it’s very real and it’s harming my life and my mental state. I have inevitably given up on doctors and am looking at alternative medicine. I’m extremely determined to get myself better (regardless of going through a healing crisis) and I firmly believe I will get my life back. I’m just trying my best to make it sooner rather than later.

At times I still hate being me. I do still get depressed and I still break down sometimes, but I try and remember some of the good things I still have in my life; a family, amazing friends and achievements I’ve managed despite struggling with these issues and other events. I’m still alive and I can’t change the past and years I missed out on, but the future is still here and who knows what that holds. Maybe the pain and frustration of the past will pave the way for a future filled with health and happiness and that’s what I’m focusing my energies on capturing!

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