Supports and Help
Having adequate support for multiple sclerosis is incredibly important. However, what ‘proper support’ looks like for each individual may be different. Some people require a support team of many doctors, friends and family to help them with managing their symptoms, appointments and daily tasks. While others need less around the clock support and just need a few close friends and family to help when the need arises. Others may do just fine managing their disease on their own.
Questions to Ask
One of the biggest things to consider when thinking about the idea of support is are you getting enough? And what type of support do you specifically need? The answer to the second question can certainly be fluid and change over time. What you may need one day, you may not need the next. This may be a question that is difficult to answer, it may be hard to tell exactly what you need, and that’s OK.
Something else to think about, is how you are expressing your needs to others, or if you are expressing them at all. I know for me, saying that I need help, or that I need support is something that is really hard for me to do. And from talking to other spoonies, I know I’m not alone.
So what is it that makes asking for help and support for multiple sclerosis hard? Is it that we are no longer invincible? Or no longer in control? Is it that we are afraid of the response that we will get? Or the lack of response?
For me, this has been a difficulty of mine long before I dealt with MS. I had trouble reaching out for support for years. I was always afraid of the response, of it not being “good enough”; of it not being helpful. But in reality, I didn’t give anyone a chance to be helpful. I was unfair to them from the start. Then, after my diagnosis, I was in a relationship where I received inconsistent support with my MS, which to me, was worse than no support at all. I didn’t feel like I could ask, but I didn’t really want to anyway. Now, I am in an amazing relationship where there is more support than I could ever ask for.
Where to Start
How do we bridge that gap between the all or nothing? How do we take that first step that seems so scary? My answer? It isn’t cool, or sexy, or groundbreaking. It’s something that’s been said by many mothers, and Nike, for years.
Just do it.
Now I know you’re thinking, ‘Really? That’s all you’ve got?’ But yes, that’s it. Nothing has to go from 0 to 60 overnight. You don’t have to go from nothing, to asking a friend to go to a neurologist appointment with you, or a tysabri infusion if those are your versions of 60. Just starting is the point.
As soon as you flex your help muscle, the magic starts to happen. Getting over the initial fear is the biggest piece of the puzzle. Once you’re able to successfully ask, it gets easier from there.
Putting it into Practice
Start small if you have to. When someone volunteers and says ‘Can I pick anything up for you’, instead of saying no yet again, say yes. Many small yeses will add up. It will be uncomfortable at first, it certainly was for me. But overtime, getting support for multiple sclerosis it will get easier.
I didn’t say overnight, I said overtime. Think about these questions for a minute. What is something you need right now? Is there someone you can ask to help with what you need? What is stopping you from doing so? Whatever you come up with you may or may not decide to act on it, and that’s ok. What matters is you challenged your old thinking patterns, and considered new ones.