First, let me say how ridiculously blessed I am. My husband, children, mother, siblings, and dear friends were amazing to me when I was diagnosed with MS and have been a constant encouragement no matter what is going on in my life. I absolutely do not know what I would do without them.
But recently, when discussing my amazing support system, I was asked what advice I would give someone who’s loved ones weren’t as compassionate or understanding. Even though I try to focus on the good 90% of the time, there have been some hurtful moments, comments that stung, and some ignorant statements from some people. Here are a few comments that stick out to me: “At least it’s not cancer.” “I told you about it… it’s probably your MS brain that made you forget.” I’ve had articles shared with me on social media from unreliable sources that only stirred up panic in me about my medicine or a possible complication of MS. Even my husband has made jokes about my memory before, not realizing how sensitive I was to the subject (he got an education, real quick :)). It can be easy for those of us with a chronic medical condition to only focus on the negative and feel isolated and hurt. However, my prayer is that through some simple steps, we could all have a solid support system around us. Here are my tips!
First, educate yourself. I remember spending hours and hours reading everything I could get my hands on about Multiple Sclerosis after diagnosis. I will advice, be sure that you are only reading reputable sources, (National MS Society has a vast amount of resources!). Stay away from any blogs or crazy articles that bring you down. You need facts and information, but not speculation or sad stories from people who likely have a different type of MS than you.
Your neurologist is an expert and you are paying for their time. Make the most of it! Write down your questions leading up to your next appointment and pull out your notebook and ask away. Jot down notes and read them back to make sure you understand everything. If your neurologist seems put out by this or unwilling to answer your questions, find a new one. Simple as that. Having a neurologist you trust is important.
Second, educate those around you. Have a spouse or loved one go to every neurologist appointment with you so they can ask questions as well and hear all of the information. Don’t keep your disease a secret. I understand that being diagnosed with MS is a lot to process, but you should never do it alone. Explain it to your children, parents, family and let them ask questions. Give them as much knowledge early on as possible so that as the years go they can better understand your good and bad days.
Lastly, educate your loved ones on your limitations. For instance, I have trouble driving at night. My night vision began to worsen long before I was diagnosed with MS and I wasn’t sure why. As a result, I try hard not to drive on interstates after dark. Generally I’m fine in well-lit areas, but the darkness of the highway with the constant passing headlights causes me to strain to see and I often end up with a headache and I’m terrified I wouldn’t be able to see a deer or something in the roadway. My loved ones know this about me and usually offer to drive for me or don’t expect me to come to events out of our town at night if my husband isn’t able to come with me. If I had never educated them on this limitation, they might just assume that I was being anti-social or didn’t want to spend time with them. But because I’ve educated them about my disease and this obstacle I have, they help to accommodate me.
One of the challenges of MS is that it’s an “invisible disease”. We can go years without a major flare and so people can forget we’re even sick! Don’t get annoyed when people forget, because they don’t deal with this disease on a minute-by-minute basis like you do. Explain your limitations and why you have them. Help them understand what happens when you don’t set boundaries. Don’t be defensive. Believe the best in them. If they don’t understand why you can’t do this or that or why you need help with something, they can’t be supportive. Keep explaining until they get it!
The best way to isolate ourselves is by not communicating our needs or when someone has hurt us. It goes back to educating. Most hurtful comments come from a place of ignorance. People make assumptions and careless statements based on little knowledge and this can result in us feeling hurt and completely alone. Notice I said communicate though. That does not mean explode in anger and storm out of the room (as I’ve been known to do… not my proudest moments). Take some time to process if you need it, but do not let much time pass before you sit down and explain how while you’re sure they did not intend to, their comment stirred up fears or feelings of inadequacy in you. My husband now understands that the negative feeling I struggle with most because of this disease is feeling “damaged.”
I hate being reminded that my short-term memory is damaged because of a lesion. I’ve learned that I need notes. Lots of notes. And phone reminders. I have FOUR calendars tht I update weekly! And still, I believe my short term memory is better than my husband’s and he doesn’t have MS–ha! But occasionally I forget a insignificant conversation or information that was relayed to me in passing at home. The most hurtful thing my family can do is act annoyed or aggravated with me when they realize I don’t remember. I’m quick to remind them that my brain is busy processing everyone’s schedules and to-do lists, when to take my medication, all of my work and volunteer responsibilities and the fact that I forgot a story about co-worker “Jeff” or classmate “Suzie” really doesn’t matter in the grand scheme of things. They now usually start by saying, “Hey, remember the story I told you about Jeff?” to which I usually respond with a “nope!” and so they give a recap before giving an update. This works much better for everyone!
Do Good for Others
It’s easy to get hurt if your primary focus is on what others are doing (or not doing) for you. No matter what your circumstances are, you can find ways to be kind and generous and just spread some goodness and love. Give gifts, bake cookies, text your friends to see how they are, send cards, date your significant other, and most importantly find ways to give back to those in need!!
Everywhere you look, there are hurting people. There are people in this world who have to walk 6 or more miles a day for water significantly dirtier than what’s in your toilet? How’s that for perspective! There are ways you can help! We can all give our money, our time, our resources, and our encouragement.
An easy way to give back and get yourself a super cool T-shirt to wear for Easter is to join the Forget The Frock movement. Check our their website to learn more
It’s a total cliche, but just treat people the way you would want to be treated! Be someone that people like to be around! I know it’s hard, I know you’re scared, I know you feel alone… I am right there with you. And honestly, no one in your circle can completely understand what you’re going through. But don’t try to force them into supporting you. Be so sweet and kind and lovable that they are willing to lasso the moon for you!
Know When to Let Go…
Inevitably there are going to be people who just aren’t good for you to surround yourself with. Know that it’s okay to distance yourself from those people. Negativity breeds negativity. Don’t fall into the trap! I’ve said many times that I believe 90% of any battle is a positive attitude. You will not have success or happiness if you are constantly exposing yourself to someone or something that brings you down. I tell my middle school daughter, “Be friendly with everyone, but be picky with who your ‘friends’ are”. Make sure your inner circle is filled with SOLID people. People who love you and who appreciate the love and care you have for them. It doesn’t mean that you cut people from your life, but don’t let them dictate your joy and don’t spend as much time with them if they aren’t a positive presence in your life.
I know these suggestions are very general and everyone’s circumstances are different. Feel free to reach out to me if you need to talk! People in your life care about you. And if you feel like they don’t, know that I care and I’m praying for you to feel loved and cared for right at this moment.
And if you have a solid support system, what advice would YOU give to others who don’t feel as supported?