For the past few months, tweet chats have become an important source or information and socialization for me. The things I mostly enjoy about taking part in them is that storm of brains, that sinergy of ideas which often times gives birth to wonderful perspectives and plans.
We are social beings. Communication is our way of transmitting information, knowledge and express how we feel. Although spoken and written language is responsible for only 10-20% of the meanning of our message, and is lacking the rest of 80-90% which is nonverbal, sharing ideas with likeminded people proves to be indeed beneficial.
Last night I was part of the #MSminds tweet chat, organized by Shift.ms (@shiftms) and hosted by the wonderful Sarah Elwell (@SarahElwell1) and Anindita Ghosh (@DitaGhosh). The topic was one that is well-known amongst anyone diagnosed with multiple sclerosis: the mental health issues that may arrise as an effect of either having the disease or of going through emotional hardship without any or major support / understanding. There were five main topics discussed.
1. EMOTIONAL EFFECTS OF MULTIPLE SCLEROSIS
We first dug into what emotional effects did (or does) MS have on our mental health. Most of the answers were converged to feeling anxious, fearful and emotionally unstable, sad and even borderline depressive.
Stress was also a major issue, as MSers have to handle a lot of pressure, both internally (the body, symptoms, hormonal fluctuations) and socially (peer pressure, stigma, etc).
Brain fog happened to some of us, mostly when tired, when our batteries seem to die down. We agreed on the fact that emotions can affect symptoms through the chemical reactions that stress the nervous system even more than it already might be.
2. SUPPORT FROM PROFESSIONALS
When asked about our experience with mental health support from pros, the majority thought that it was inssuficient to non-existent. Medical professionals seem to focus more on clinical aspects of MS, leaving all the mental issues aside. Help that offered both physical and mental care are hard to find.
Most of the chatters said that they were decided to change neurologists, if they didn’t feel understood in both aspects. Many of them said that as we are all different people and the only thing in common being MS, we all have different needs, thus the approach must be suited to each individual. Some of us even mentioned the need for professional support groups, as talking with someone who is knowledgeable in these areas has proven to be very helpful. Online or offline MSer communities like shift.ms are of great help.
3. METHODS USED TO BOOST MOOD
We also spoke about what do each of us do in order to boost our moods when needed. The answers were many, but most of them focused on being your own advocate, taking care of yourself, get to know who you are, find purpose in life, create routines and find things that make you feel good.
Journaling, yoga / exercise, meditation, music, colouring, knitting, video games, basically doing normal things that bring you joy. Relatonships were an important point also, as loving yourself, your family and friends and receiving affection in return proves to be not only beneficial but essential to MSers. Mentions of having someone to confide in, to talk about all the things that we go through, living in the present and focusing on your life now were other points on which we agreed upon.
The main issue here: do everything that helps you not focus on the disease. It is only a bio-chemical reaction between two systems of our bodies. Choose what makes you feel good, calm and in control of your emotions and thoughts.
4. DIGITAL TOOLS / APPS TO HELP EMOTIONAL WELLBEING
As MSers living in the 21st century, technology was also a topic in our chat. More exactly, wht digital tools or apps do we use in order to help us look after our emotional wellbeing?
This was the fun part, as most of us said to use brain game apps, meditation apps and visual social media. Setting alarms proves to be useful in helping with not feeling anxious about forgetting something and for keeping you on schedule. Websites like shift.ms were again mentioned.
5. WHAT TO DO TO EDUCATE MSers ON TALKING ABOUT MENTAL HEALTH
The last question was about what can be done to educate MSers on looking after their mental health? The main ideas revolved around being able to openly talk about emotions and negative thoughts with someone who will truly understand, journaling, blogging, being able to tell the neuros what we go through and receive actual information about these things, in the form of a “starter-kit” or some similar package. Also, doctors need to be aware and have more focus on things like fatigue, cognition and mental health in newly diagnosed or “experienced” MSers. A personalized approach would be key.
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Some of the highlights of our discussion were things like:
- The connection between emotions and the body (connected);
- The urge to stop asking permission for being yourself (feel/be/live) and to start designing your own life and peace of mind;
- Letting go of your old self image, of your future one (possibly damaged by MS) and enjoying what today has to offer;
- The importance of adressing any mental and cognitive problems as they appear, in order to prevent complications or even worsen the disease;
- The fact that you can’t properly treat the body if you don’t care for the mind first;
- Doing something to change the approach doctors have in relation to all these aspects;
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Well, enough said! This was my (@SMartChoiceMS) review of the #MSminds chat last night. Feel free to add more insights / info in the comments below.
Looking forward to the next tweet chat.
Thank you for being here! As always, transformation starts from within.
Yours truly,
Alex
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