Multiple Sclerosis, Not Today MS, Uncategorized

What to do (and not to do)…

hands

If you’re reading this, maybe a loved one has been diagnosed with Multiple Sclerosis. Maybe you’re trying to research to better understand what they will be facing and how you can help. First, let me applaud you! Good for you. Having a positive support system is one of the best ways to tackle this disease.

After two and a half years since my diagnosis, I’ve had a lot of time to think about the things that were said by the people who surrounded me during that dark time post diagnosis and walked me through. As I’ve thought about their words and gestures, I thought it might be helpful for someone to read who’s walking a loved one through this scary and unknown time. I hope this helps you and your loved one!

  • Believe the diagnosis

I know this sounds bizarre, but sometimes we are in disbelief when we get disappointing news. My husband–while at first shocked and devastated–believed deep down that once we received the spinal tap results they would realize there had been an error and they would say I was fine. I knew I wasn’t fine. In fact, the diagnosis came as a relief or validation as it explained things I’d dealt with for years and years. Watching him be devastated a second time when we went to my first neurologist appointment was hard. I know it’s hard, but try hard to accept the hand you’re loved one has been dealt and don’t try to wish it away or offer false hope that the doctors could be wrong. Of course, they could be. And I believe in a God of miracles who can and does heal people all the time, but what your loved one needs is acceptance. Give that to them.

  • Weep with them.

The Bible tells us to weep with those who weep (Romans 12:15) and it’s so important. Grieve with them. Go with them to the deepest level of their pain and fears and let them talk. There will be a time for action plans and encouragement, but at first they need to process the news. The best thing you can do is love them right there where they are.

  • Bring them soup.

Or anything comforting. While I was in the hospital, some friends brought me magazines, toiletries and chocolates. My boss sent me the sweetest basket of flowers. After I came home from the hospital, my dearest friends brought me soup, ice cream, and all kinds of food. One of the sweetest gifts was a beautiful huge mug and lots of hot chocolate mix. I still use that mug almost daily (with black coffee or tea :)) and think about that sweet friend. No, nothing can take away the fear and pain, but reminding doing something to offer a little comfort to them helps to remind them of just how loved they are.

  • Pray over them.

I remember my husband praying over my myelin and the damaged areas in my brain. He took my head in his hands and just declared victory over me in the moments after we received the news. The peace of God washed over both of us. We were still devastated and scared, but we felt God with us. Before every test, every doctor appointment, or when I’m having a moment of fear and doubt, my husband stops everything and prays for me. I pray all the time, but there is something so special about those moments when he is praying for me. If you can’t be with the person, send them a card and don’t just tell them you are praying for them… write out the prayer you are praying! A sweet lady in our church prayed over me this way several times and it meant so much to me.

  • Don’t try to find the silver lining.

Please don’t remind them that it could be worse. Could it be worse? Yes, always. But right now, this is likely the worst thing they have ever been through. If you know of someone with MS who’s doing well, just offer them as a contact to reach out to. Don’t force that person’s story on them or try to force a relationship between the two people. Feel free to point them to my blog, but don’t be disappointed if they don’t want to read it or change their diet or take any advice you are giving them. Every case of MS is individual and every person handles the diagnosis in their own way. Just walk with them. Don’t try to shove them in one direction or another. If they ask for your guidance or leading, then by all means point them in a positive direction, but don’t try to force it. They need time to process and grieve.

  • Put on your positive pants.

After you have wept with them and allowed them time to process, get on your positive pants and help them find ways to find the good in all of this! I firmly believe God meets us in all circumstances and uses them ALL for His glory (Romans 8:28). Help them make a care plan and stick to it! Neurologist appointments, MRIs, figuring out a diet and exercise regiment that is best for them, and helping them find ways to give back to others–THESE are crucial to helping them do their part to fight this disease. If you are their caregiver, it’s your job to help them keep their care plan straight and help them stick to it! BE POSITIVE! I firmly believe a positive attitude is over half the battle!

If you are not their primary care giver and are just a friend, resist the urge to look at them like you feel sorry for them! It doesn’t happen often now, but in the months after diagnosis, there were some people who I would run into who would ask me how I was doing and they would just have this sorrowful look on their face. I was being positive. I was just giving facts about my treatment, latest appointments, etc, but it was like I was having to comfort them as I told them! That was not helpful. It’s understandable that you are sad your friend is going through this. But DO NOT put them in a position where they have to comfort you!

  • Take time for yourself to process.

I’ve told my husband many times that I wouldn’t trade places with him for any amount of money. I think it’s much harder to be the caregiver than it is to be the patient. It’s so hard to watch someone you care for go through something hard and you don’t have the power to fix it. Take the time you need to process what is happening. Allow yourself to grieve. See a counselor. Confide in a trusted friend. But don’t try to be so brave than you push your emotions to the back burner and it ends up causing you harm later. It’s a lot to process.

I truly hope this helps some of you! Feel free to shoot me a message if you ever need someone to talk to! Praying for those of you just beginning this journey!

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