Supporting My Support Partner: Part 1

Living with multiple sclerosis (MS) has made it important for me to accept assistance and support. I had to learn my own limitations and when to ask for what I needed. Has it been an easy journey? Nope, not at all.

As someone who has more than a bit of that traditional American individual ruggedness, I had to put aside my pride. I admitted that I cannot do it all by myself, for myself. For many people living with multiple sclerosis (PLwMS) that may mean finding a consistent support partner. However, what happens when the person providing support needs support?

The tables turned

My support system includes healthcare professionals (HCPs) that work with me on my MS, both physical and mental. I have wonderful friends and other PLwMS with whom I can commiserate. Griping can feel great sometimes. Along with that I have a family member who has been providing me with help when I need it. For other PLwMS, a spouse or professional may be a part of their multiple sclerosis team. I just know that I have come to rely on the help that I received.

One day, the tables turned and I became the one helping and providing support.

Although my support person's surgery went well, it was the aftermath that was the issue. Not only did she require my help, she was completely out of commission. Suddenly, I was not the person with a chronic illness who received care. I was the only option for her, and I had to step into her shoes. I was more than happy to jump into a new role. I had been loved and desired to love in return. Helping became my love language.

Can I do this?

When my support person became ill, I was the only available help. Along with a strong desire to be there for her, I had a lot of fear. I am a person who is living and thriving despite my chronic illness. That does not mean I was fully prepared for the responsibilities that lay ahead for me. I was scared that my MS would prevent me from providing the aid that she needed. From wound care to antibiotic administration, it was all on me.

The person who supported me from day one and seemed to always be available to work with me was now the one who was in a vulnerable position. I expected a role reversal at one point, just not as soon as it happened. My concerns were legitimate. Would I have a debilitating exacerbation that interfered with my duties? Could I overcome my fatigue, or would I accidentally oversleep and miss giving medication?

Switching sides and stepping up

If you are a PLwMS, your attention can often be directed towards your own health. It is not selfishness. It is for literal survival. Monitoring symptoms feels like a full-time job at moments, but is important to track.

Switching from that automatic focus was my first step in becoming a support partner. It was not about thinking less about myself. It was adding another's condition alongside my own. I knew I needed to figure out how to take care of two people at the same time.

The first thing I did was to talk to my support partner. Together we looked at what her needs would be and how I could help. We started with the physical needs, such as a wound care and medicine schedule. That gave me a solid idea of what I had to do in a timely manner. We did not stop there, but it took time to understand what she would need emotionally and mentally. It was an honest discussion of what we could expect and ways in which to address them.

Learning from others

While Google gets a bad reputation when it comes to looking into medical issues, it can be a godsend. My next step was to look up how to be a good support partner. I did this to look for any areas of care that neither of us considered. There is no reason to reinvent the wheel. There is no shame in learning from the experience of others! Armed with subjective and objective information, I felt prepared to step up and take on this challenge.