Pain, Pink Elephants and Peer Support

By Ingunn Westerheim, OIFE President

I am going to start this editorial with a quote from the Australian physiotherapist Verity Pacey. You can read an interview with Verity in this OIFE Magazine, which is a special edition about OIFE around the world.

“Don’t wait for your healthcare team to ask you about pain and fatigue – tell them if you have these symptoms and ask for a referral to see someone to try and help. Every time you do this you will help your healthcare team learn more about managing daily activities when you have OI. Some of the best tips and strategies to make daily tasks easier are likely to come from your peers. Keep on supporting one another and advocating for your needs through organisations like the OIFE.”

Verity Pacey

Happy New Year we say, while we watch fireworks and listen to ABBA singing about confetti on the floor. Happy Schnappy… 2023 had an exceptionally bad start for me this year. It started with a very sore throat on New Year’s eve because of a cold I dragged back from Switzerland. It developed into a bad cough, which was the fourth one in 5 months.

But three days later I had a medical emergency of quite another character. Many people go around thinking that OI is all about brittle bones. But they couldn’t be more wrong. The IMPACT survey showed that the 3 top problems for adults with OI are pain (82%), fatigue (ca 70%) and soft tissue problems (ca 55%).

My biggest soft tissue problem besides muscle pain and inflammation has been too soft tissue in my so-called private parts. Yes, I am going to be explicit and personal now (maybe too personal for some) – but I already shared this information with 1260 people in the OIFE Adult Health group on Facebook, so I might as well share it with the rest of you.

On January 3rd a problem I’ve had for 6 – 7 years escalated and my uterus had a full prolapse. I simply could not get my body parts to stay where they were supposed to be, and it was causing a lot of pain. I was sent to hospital in an ambulance, where the gynecologists scratched their heads and looked concerned. This had never happened to a person in their 40s before. It ONLY happened with older women who had given birth to a lot of children. I told them that OI is a connective tissue disorder because of poor collagen and that this was probably a reason, something they agreed on.

The problem was that they didn’t know how to deal with it. My body was small, the internal organs were in strange places and full anesthesia wasn’t exactly something they wanted unless they really, really had to. So they first tried one procedure, which turned out to cause excruciating pain on my behind. Failure! The next day they tried another procedure, which caused intense pain in my bladder. Failure again! I will not go into all the gory details. But let’s just say that during these 48 hours I got to try all the pain killers in the catalogue – and most of them had more side effects than actual pain relief. But it was an “interesting experience” as some might choose to call it.

The doctors were weighing back and forth – hysterectomy or hysteria – that is the question. And how to do it? When? And if? So many questions, so few answers. But they actually agreed that they should probably listen a little bit more to the person with the problem: Me.

I decided to turn to the place I know best – the international OI-community. I asked a question in the OIFE Adult Health Group on Facebook, which is a group of 1260 people with OI (and nobody without) from more than 80 different countries! I asked if there were women with OI who have had the same procedure and what I should think about and not to forget – ask the doctors about. And I got a lot of response and good peer advice. As Verity said – some of the best tips and strategies are likely to come from your peers.

I am fortunately back home again and doing quite well for the time being. The doctors in Oslo University Hospital are still thinking. Surgery is postponed until March. I don’t have all the answers yet. But I feel incredibly grateful for this wonderful online community we have – where we can ask peers for advice based on lived lives and people with OI’s own medical experiences. On the contrary to what people think – it is NOT medical advice – because most of us are not doctors. But advice from peers can give people important things to consider when talking to professionals. And not to forget – emotional support.Headshot Ingunn

You can read more about our peer group another place in the magazine. Join us if you are not already a member and tell your OI-friends you think might be interested as well!

And the Pink Elephants? What have they got to do with this? Join us for the conference “Balancing Life with OI” in Stockholm in June 2023! You will get to know…

Ingunn Westerheim – OIFE president

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