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Living with RA and UC

Heidi, Mireille and Garry share their experience about living with immunological diseases, rheumatoid arthritis (RA) and ulcerative colitis (UC). Three stories about getting through the day the best way possible.

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‘Because RA is invisible, not everybody understands’

RA patient - Mireille - 2 (photo)

Heidi has rheumatoid arthritis

‘When I wake up, it takes up to 50 minutes before I can get out of bed because my whole body is stiff. The first two to three hours in the morning, I do everything slowly and for the rest of the day, I make sure I pause enough. It’s important to keep moving even when you are in pain. I try to walk every day for 30 minutes and I go to my physiotherapist two times a week. We try to move forward but it is difficult. If I have a flare, I have to take two to three steps back again, so it is with ups and downs.’

‘Sometimes I have to say ‘no’ to plans with family or friends, because of the fatigue or the pain, or simply because I am having a bad day. RA is very unpredictable. And because it is invisible, not everybody understands.’

RA patient - Mireille - 2 (photo)

‘I sometimes can’t even move a pillow’

RA patient - Mireille - 1 (photo)

Mireille has rheumatoid arthritis

‘Unfortunately, the flares now take more control over my life. I used to cycle, swim and run but these are now reduced to smaller activities. I used to play the flute, but this has become more difficult too because of my erosive joints.’

‘Sometimes I have to change my plans at the last minute due to pain or fatigue. Fatigue is when you have a lack of energy, and nothing helps you through the day. Pain can occur when moving a pillow or trying to tie a button, and all daily tasks become difficult.’

RA patient - Mireille - 1 (photo)

‘I had to learn not to blame myself’

UC patient - Garry (photo)

Garry has ulcerative colitis

‘I was 29 when I got diagnosed with UC. It took a couple of months to get there. I experienced more and more infections, as well as blood in my stool. You tend not to want to talk about these things. So, it took a bit of courage to go to the doctor in the first place.’

‘Once diagnosed, things went downhill rapidly. I started to go to the toilet more often, I lost weight, I found it difficult to keep food and liquids down. Eventually, I became quite lethargic.’

‘Being diagnosed with a life-long illness for which there is no cure, that is quite daunting, especially at an age of 29. Not being able to control your bowels has a big impact. I had to learn not to blame myself, and to try to get through the day the best way possible.’

UC patient - Garry (photo)
Rheumatoid arthritis (RA)
A chronic, systemic inflammatory disease that causes joint inflammation, and usually leads to cartilage destruction, bone erosion and disability
Ulcerative colitis (UC)
UC is an IBD causing chronic inflammation of the lining of the colon and rectum (unlike CD with inflammation throughout the gastrointestinal tract)