Invisible disabilities / illnesses
Last updated: October 2020
74% of people who suffer with a disability do not use a form of visual aid yet despite this we get forgotten about in a number of different scenarios.
My name is Jessica and I have 3 main invisible illnesses (IBD, CFS and Depression) along with some other conditions.
Until the age of 24 and 3 years ago my health issues did not impact my physical abilities. I was in a successful banking career, which I had built up from the age of 19 and I was engaged to my now husband Dale. We were going through the process of buying our forever family home, planning our wedding and we were going to start trying for children after the wedding. Things started to change just before my 25th birthday when my then IBS symptoms (chronic constipation) changed to regular toilet trips, accidents, bleeding and abdominal pain.
My doctors were absolutely amazing
They listened to me straight away completing all the required tests to try and determine what was causing my symptoms. My bloods came back fine but my stool calprotectin test was severely raised at 2046 compared to normal markers being 0-50, so I was referred to a specialist with me having to wait for a scope.
During this time my symptoms were getting a lot worse with me bleeding up to 30 times a day, having accidents when moving position on the sofa and crying out in pain. I ended up taking myself into hospital in the early hours of July 13th 2017, I was stuck on the toilet feeling like my insides were being torn out. It was like a massacre and it wouldn’t stop.
This is when I first heard the words ‘IBD’ and treatment was started by the A&E doctors.
After 2 1/2 months I was relieved to finally be started on something to help, however things weren’t that simple. I didn’t realize how unwell I actually was. On 17th July 2017 I received my scope and was diagnosed with acute severe ulcerative colitis.
I was told I would be treated as an urgent case and the following day it became apparent how serious it was and that’s when I got scared. I had to start on a chemotherapy drug (Infliximab) and if this didn’t work I would have to have Stoma surgery. The treatment was started on 19th July 2017 and I held onto hope that it would work however, by the 21st, I was told that emergency surgery would need to go ahead otherwise I could die.
I was in complete shock
I felt like the ground had swallowed me up. I had no time to process my diagnosis let alone living with a Stoma.(This is something that many people do not understand. People do not realize that things can be life threatening for us). My colon was removed and my ileostomy created on 25th. During this time they also found a Grade 1 tumour in my appendix.
The support from my parents and my now husband was amazing. I could see how hard it was on them, they felt hopeless and were worried about losing me. They were there by my side every day and without their support I don’t think I would have coped mentally.
Life with my new Stoma isn't easy
The following day I saw my stoma for the first time and I was mortified and felt disgusting. I questioned how I would live my life with it and if Dale would still love me like that. Despite this I tried to stay positive, telling myself it was worth it to get my normal life back.
Unfortunately my health has deteriorated so life is not back to normal for me and this is what I find the hardest to accept. I see numerous people recovering after their surgeries, getting back to normality and question why I haven’t. I love seeing such positive stories but I also find them upsetting.
My health is too unpredictable so I’m now unable to work, which has caused me to give up my career I worked so hard to achieve. This has impacted us financially as I was the main breadwinner and we do not quality for universal credit / a council tax reduction despite my husband being on minimum wage.
We also question whether I will ever be well enough to have children and I find that heart breaking. It's something I’ve always dreamt of and I feel like I’m letting my husband and parents down too.
Severe bowel obstructions
After my surgery I was in and out of hospital with severe bowel obstructions, which lead to further emergency surgery 3 weeks later. My bowel had twisted which was causing abdominal pain and my Stoma to pass blood.
On day of discharge my wound burst open due to sepsis so my wound had to be left to heal from the inside, out. My bowel obstructions continued so my surgeons decided a j pouch was needed but they held off my surgery for us to have our wedding day.
Our day was absolutely amazing with many memories to cherish, although I did fall ill in the afternoon and had to leave the celebrations just gone 8pm.
Stage 2 of my j pouch surgery went ahead on 26th April 2018 with it taking around 8 hours and me needing a blood transfusion a few days later. Stage 3 went ahead on 12th July 2018, which is when my j pouch was functional and my Stoma was closed. My wound was kept open to avoid any issues like before. I ended up back in hospital a few weeks later after going to the toilet over 50 times in the night, which had caused me to become severely dehydrated and have stage 1 kidney damage.
Coming to terms with my Stoma was one of my hardest mental fights. I was suicidal for the first 6 months but then started to see the positives it gave. It had saved my life and I was thankful for that. It didn't change me, it made me so I was sad to see it go but knew that the j pouch could help me live a normal life again.
My stoma had been apart of me for a year, so waking up to an empty belly was very odd and even going to the toilet like normal took a little while to get used to. Despite my stomach now having scars, I see my body as beautiful. My scars tell my story and remind me how strong I am.
I have became a stronger person with everything I have been through and I'm proud of ME.
Unfortunately my physical health didn’t improve. My wound took 6 months to heal
This is when I realized something wasn’t right with my body
My first wound was a lot bigger yet only took 2 months to heal. I also felt tired all the time but put it down to my body recovering. Mid way through last year I decided to take myself to the doctors as I was always exhausted despite my recovering ending. It was stopping me from living a normal day to day life like everyone else so I was hoping to get some medication to resolve it.
After numerous tests, I was diagnosed with chronic fatigue syndrome but was told there is no treatment for it. So how would I get my life back? At the time I was 27 yet I was struggling to do household tasks without feeling tired. I would have to nap after going out and I was constantly cancelling on plans because I didn’t have the energy for them. I figured over time things would improve but now its a year later and my CFS has became more severe.
Most days I struggle to get out of bed / go to the loo with me needing help from my husband or mom. There are times I collapse if I have managed to get up and walk. If I have a good day, I am exhausted for a week or so after if I have overdone it and I still need a nap after doing a simple task at home like the washing.
Chronic fatigue syndrome
It is unknown what causes CFS but I feel mine stems from 2 causes. I feel my glandular fever in 2015 could have triggered something and my trauma to my body in 2017-2018 is the result of the severity of it. I'm hoping more research will go into this based on those still suffering post covid.
When my bowel complications first started, I began using disabled toilets to stop embarrassment, help me change after an accident and avoid having to queue when I was desperate. I continued to use them with my stoma as there would be times I would leak and I now use them with my j-pouch because I have a build up of wind and always open my bowels even if I only need a wee. Despite most of these toilets having a ‘not every disability is visible’ sticker on them and me having a radar key to access them, I receive discrimination on numerous occasions. For this reason it has became a habit to check before coming in and out of them to try and avoid confrontation.
Living with an invisible illness
I've received abuse from the general public queuing, staff members and from those with a visible disability (with one saying they have more right to use them). I now use this as a purpose to educate them on the spot but there are so many people with invisible illnesses and disabilities that are afraid to go out in public because of this.
These illnesses / disabilities drain us mentally as well as physically, so it makes it hard to deal with other people's judgements. Especially in public when we are trying to live our lives. Although my life is very different today, I have turned my experience into a positive by raising awareness of invisible illnesses and disabilities.
I feel there is a lack of education out there, which causes a lot of issues for us so I run numerous projects to try and help end the discrimination we receive.
How I'm spreading awareness
1. I created an image to make the invisible visible by bringing conditions to life, trying my best to represent as much as possible without it being over crowded. I started using this on merchandise and posters on our website www.makingtheinvisiblevisible.org.uk, whilst donating all profits to charities that support us.
2. I run a private facebook support group (IMVisible - Invisible Illness and Disability Support) to help those with invisible illnesses or disabilities. It allows them to have a safe place to talk about their issues whilst getting support or advice from other members.
3. I video interview people to talk about their journey with an invisible illnesses / disabilities and use them to educate others.
4. Prior to Covid I launched group photoshoots to help empower those that fight / have fought negativity to show that we are good enough despite this. This is something I created as photoshoots helped me love myself after surgery and my photos also helped others with one being used on the front cover of Tidings magazine in 2019. I am currently creating this project into a calendar for 2021, although Covid is causing a few issues.
5. I enjoy running charity events with me raising over £2200 since June last year from them. I always incorporate awareness of invisible illnesses and disabilities into these. I had my biggest event planned on 28th March this year but this had to be postponed until February next year. Despite this, I've still raised £500 through virtual events during lockdown.
6. I started competing in pageants last year as a way to show that beauty comes in all forms. My first competition was Mrs Galaxy, which is one of the biggest in the UK. This had a swimwear round so it gave me the opportunity to show my scars. I felt empowered on stage, which is why it has became a big part of my life. I competed in Royal International Miss UK in February this year with me coming 2nd in the role model competition and 3rd in my division. I have decided to return to the same competition next year with the aim to win my division, which will take me to the Orlando completion in 2022.
I feel it’s so important to turn our experiences into positivity and it’s always been important to me to help others where I can in life.
I hope my projects successfully reduce or even end discrimination for others. I have lots more planned including talks I've created for schools and workplaces.
This has given me another purpose in life. I've received so many messages from people saying how I’ve helped them, which fills me with joy.
Does living with IBD impact you financially?