What I have learned from the pandemic and why connections are so important (Guest blog)
30 May is World MS day. The theme is #MSconnections. As I heard about it some weeks ago, I thought that this is matching perfectly with the actual situation. I am living with Multiple Sclerosis for more than 15 years now. Never before it was so important for patients to have good connections. A network to help us support each other.
I am a very organized person. But I was not prepared for a lock down which can limit my access to important services that help manage my life with MS. Nobody was prepared. At some point, I experienced what they call an MS – hug. It is a group of different symptoms caused by spasm in the chest. It is painful and a common symptom when living with MS, but I also experienced some other mild symptoms. What I would have need is to see my physiotherapist. But this was a mission impossible due to the pandemic situation.
It was clear, nobody had a solution to managing a chronic disease in times of corona. Check-ups and tests were postponed in many cases, also surgery. Patients with chronic diseases stranded in a waiting line for almost everything. Receiving a simple prescription for our usual medication became a challenge as not all doctors were available. Others stuck in the pharmacy hearing the medication was not available because of shortages and closed borders. Physiotherapists closed their practice. Patients were left alone. Some of them lost the ability to walk, others, like me became very stiff and had expriencedmore pain as usual. Another worry was the risk of getting infected when you do go to a physician. Some patients have to go to the practice when they need a prescription. Digital health solutions like Electronic Health Record, telemedicine or electronic prescriptions are not available in all countries to protect people. Lots of questions and very few answers.
Managing a chronic disease is not easy in general, but to navigate during a pandemic is even more challenging. All we heard that was that we are “people with a higher risk”, we were lacking clear information what we could read or hear was often conflicting. As a journalist I have learned to be critical of what I read in the press, but even for me it became difficult to filter relevant information.
I really had to think how can I take care of myself? What will be my personal pandemic plan?
As a blogger for more than 13 years I have a valuable network on social media including many MS patient like myself, so I have started to share my problems. I have received wonderful support and realized, that I am not alone. There are many other people, experiencing similar issues and it was not easy for any of us. As soon as somebody was aware of news from the government and the healthcare system, it was shared. Also, patient organisations did their best, to answer questions and give advice on how to navigate the situation. This was really helpful and provided us with a lot of comfort; the community is here to give support.
Connections work. #MSConnections work.
I have also received a lot of questions from other patients via social media that I’ve tried to answer. I realized people started to find their own ways to help themselves, they created own crisis plans. Patients became more aware about the importance of having their medication in stock, others like me, have started to find training programs online to eliminate spasms and ease stiffness. Defining a strategy helps us be more independent and takes away the feeling that we are completely helpless.
Even if there were some crisis plans in place by governments and health care systems, it seems, that nobody updated them over the years. In my opinion this is one of the reasons that we had such chaotic situations in healthcare. We must learn from this pandemic and start to develop plans for crisis situations like these and to consider people living with chronic illnesses who need regular therapy and care. We also need to ensure availability and access to medicines and decrease our reliance on countries outside of Europe. We all have to come together now, patients, carers, doctors, industry, healthcare systems and define new strategies.
Of course, we as patients should have our own plan in place to take care of our individual needs.
Like many other patients, I now have access to my therapies again. With one disadvantage: After more than 6 years of work and taking care for myself I have to restart almost completely from scratch. This shows the sensitivity of our condition and what a few weeks’ gap in therapy can mean. I also know about other people living with other chronic diseases, that they have to start learning walking and speaking again.
But as I mentioned, I know I am not alone and this helps. I have #MSConnections to be able to take care for myself and also for others.
I am convinced, that this pandemic has taught us a lot and we will build on these learnings and experiences to be better prepared in the future.