My name is Jessica Logan, I'm 29 years old and I am the founder of Making the Invisible Visible.
The initiative was created to educate others on the hidden struggles that we have in the hope that it would help to end the discrimination we can receive.
I also wanted people with hidden disabilities to know that they are not alone, that they have value and are appreciated.
I sell awareness merchandise and run projects which have helped me raise £1050 for 10 chosen charities (1 of them being the ME Association).
I received my official diagnosis of ME/CFS in 2019, however my journey began 4 years prior in October 2015. I became really unwell with glandular fever and It took me months to get back into my routines but I still felt exhausted and couldn't do as much as I did before.
In 2017 I was on a rollercoaster journey with my mental and physical health. My mum was diagnosed with lymphoma and a few months later, I became concerned with a change in my bowel habits.
I went straight to the doctors at the end of April 2017 explaining my bowel related symptoms and they completed all the relevant tests. My C-reactive protein (CRP) was normal but my calprotectin was 2046 (0-50 range is normal). They referred me to a Gastroenterologist and whilst waiting my symptoms progressed, so they pushed for an urgent consultation which happened in June.
At my consultant appointment they refused to listen to my new symptoms and acknowledge my calprotectin test because they were adamant it was my IBS and focused more on my past medical history. However, as part of the process they referred me for a flexible sidmoidoscopy and a colonoscopy and whilst on the waiting list my symptoms continued to get progressively worse, and my doctors pushed for an urgent endoscopy, but it was refused.
I tried to push through until I was dragged into hospital by my parents after phoning them in the middle of the night in tears feeling like my insides were being torn out. I ended up in hospital fighting for my life and needed emergency stoma surgery. My stoma surgery meant I had my entire colon removed and my ileum (small intestine) was pulled out of an opening created in my abdomen so my waste could be collected into a stoma bag.
I had acute severe ulcerative colitis which was the start of my major health problems. I had 4 surgeries in the space of a year and suffered with complication after complication from sepsis, bowel obstructions, infections and too much blood loss. Eventually the care I received from my doctors was outstanding however beforehand unfortunately, I was medically gaslight despite my symptoms progressively getting worse each week.
If I had waited for the appointment for the routine flexible sidmoidoscopy / colonoscopy, I truly believe I wouldn't be alive today. Afterwards I saw my usual doctors and discussed the stoma surgeries, and they were emotional to find out what had happened.
My recovery after the last operation took a long time, and I came to realise that something wasn't right. The wound took over 6 months to heal and I was struggling to do activities around the house.
I felt I had to give my body a chance to heal, so I didn’t go for additional tests until a year later, which is when I received the diagnosis of ME/CFS.
Other symptoms of ME/CFS I experience (not just profound fatigue):
- Brain fog and mixing up words
- Headaches
- Night time sleep problems
- Deep dreams
- Swollen glands
- Weak muscles (I don't have strength to sit up in bed at times so husband has to help)
- Dizzy spells (especially when getting up too quickly)
My health has continued to deteriorate especially during the pandemic. My mom has been my carer since I've struggled with my ME but unfortunately, she was classed as vulnerable and myself. It was difficult being stuck inside and not see my mom for so long. I found going back into society extremely hard with my anxiety to the point I was having panic attacks.
I noticed my fatigue was worse and weakness but not sure if there was a connection. I had to give up work in 2018 because I didn’t know when I would be well enough, and I still struggle to do much on my ‘good' days. Now I find myself stuck in bed a lot and there are times when my husband has to help me to the toilet.
We had to make the heart-breaking decision not to start a family as I just wouldn’t be able to look after a child. It hurts and having lost so much – especially those things that I worked so hard to achieve – has had a massive impact on my mental health. I know it's out of my control, but I feel like I've let my loved ones down.
Despite all of this, I'm proud of what I have managed to achieve and for surviving this ordeal. I don't want my illness to define me, so I aim to help others through my work. Thankfully, and when I need to, I can sit in bed and do most of it, but I will be expanding the initiative further by running workshops in schools etc.
I started taking part in pageants in 2019 and they've helped me find my voice to make a difference. The community are extremely supportive and it’s nice to see so much diversity in the beauty industry. Representation of those with invisible illnesses and disabilities is missing in society and this is what I want to help change.
I'm currently your Mrs Diamond West Midlands and will be competing next October with the chance to take my platform to Las Vegas. I also run my own charity pageant for those with invisible illnesses and disabilities with the first one happening this week (23/10/21)
I get judged for cancelling on plans and not working because there are times I'm at events and people don't understand I have good and bad days because of ME/CFS. I must pick and choose what I want to take part in but be prepared to cancel if my health isn't the best. I'd love to be able to do everything, but I just can't.
An event can knock me about for weeks and even a day out with friends can impact me for a long time afterwards. It’s not that I'm lazy or I'm a rubbish friend. It’s because my body won't let me do what I want it to do.
I know I'm not alone and that's why I wanted to tell my story.
