I want to apologize for the very behind, lack of posting. My intention was to try and attempt a blog entry at least every other day for World Rare Disease Month, but as I'm sure you understand, life has a funny way of having its own plans and I get sidetracked! Even though Rare Disease Month is technically over, in my life it's never over. So for this post I will be doing an entry of "Things to do/say to someone with rare/chronic diseases!" I
didn't want to leave my blog on a sort-of negative vibe, suggesting all the things NOT to say without giving you suggestions that WOUL D help. So that's what I am going to try and attempt now! Reminder: this post is not limited, more as just a few ideas that you can say or do to help out a rare patient!
didn't want to leave my blog on a sort-of negative vibe, suggesting all the things NOT to say without giving you suggestions that WOUL D help. So that's what I am going to try and attempt now! Reminder: this post is not limited, more as just a few ideas that you can say or do to help out a rare patient!
1. I am here for you.
This is my favorite one. For someone to tell me that they are here for me, means more to me than they will ever be able to comprehend. Being a rare patient can be very lonely, isolating, and at times, depressing. For someone to tell me that through all the ups and downs this life will bring me, they will remain by my side, fills my heart with such love and thankfulness.
This is my favorite one. For someone to tell me that they are here for me, means more to me than they will ever be able to comprehend. Being a rare patient can be very lonely, isolating, and at times, depressing. For someone to tell me that through all the ups and downs this life will bring me, they will remain by my side, fills my heart with such love and thankfulness.
2. Stop by for a visit and/or offer your company.
Offer to pay them a visit and sit down with them. It doesn't have to be an extremely long visit, even just a few minutes. Stopping by and
letting us know that we mean that much to someone for them to want to spend time with us, despite everything going on with our health, means a lot. We don't get out of the house much, and when we do, it's usually only to the hospital and pharmacy. We just don't have the energy for doing much. So to have someone be willing to spend moments of their day with us, is meaningful. Visits in the hospital, varies. I've had people come to visit me while inpatient, knowing I may not be able to talk to them, move out of bed, or anything, they still offer their love and support and pay a visit, say a prayer, hold my hand, and show me they're here for me. (Now, just because you don't visit someone all the time or spend time while they're in the hospital every time, does not mean you don't support or love them. The occasional, frequent visit is plenty.) ♥
3. Ask q ues tions.
I have always loved it when people ask me questions about some of my illnesses. For someone to ask me how I'm personally affected by my illnesses or have me explain more about what it is, means a lot. It means you truly care and want to know sort of a summary of the type of battle I'm fighting. Never assume, just ask! Nothing is too personal for me, as long as it's not for you. Asking questions is just one of the ways to spread more awareness about rare diseases!
4. I believe you.
When someone tells me they believe me, it means more than the average person might think. Since I've been on this journey a long time now, I have had my fair share of people, doctors, etc... not believing that I was truly sick. When tests come back negative, when blood tests come back normal, it can be hard to believe that person is truly sick. When I'm smiling or laughing, it can be hard to believe that I'm in pain. I try my hardest to hide my sickness or at least subside it from being completely visible. So to have someone tell me that despite all my efforts, that they believe me when I tell them I'm ill or in mounds of pain, is a relief, a weight lifted off my shoulders.
5. Keep your word & practice what you preach.
One of the things that I've found out to be all too true is that people often just say things they think I want to hear or they say things that "sound good" but they don't keep their word. Or it's just that, they're just words, and they say them but they don't really mean them. Friends who said they would do this or do that, but they never do. They offer their help or their support but aren't around when you need them. It's easier to offer your help with something or to tell them you are here if they need anything. But, like many other people with rare/chronic diseases, I don't often tell people when I need help or ask them for it. Instead of offering your help, send a text sometime and ask if they have any upcoming appointments that you can take them and support them through. Don't offer, just do it. Call me and tell me you're coming to my infusion with me. Text me and tell me that you're dropping off some dinner for my family so we don't have to eat the hospital food again. Instead of offering and never hearing from that person, just do it.