Support is essential when you are living with some kind of chronic illness. When your life changes and your health declines you feel more and more alone. At first your family and friends can’t seem to understand what you are dealing with. They try but in a lot of cases they really can’t understand what we deal with daily unless they live it. Sadly, as your health declines you often lose much of the support you did have, because people either can’t deal with what is going on or get annoyed that you can’t do the things you used to do. So where do you find support? Where can you find people who can sympathize with what you are dealing with?!?
Now days you can find just about anything on the Internet, including support. By doing a simple search on any web browser or on Facebook you can find a multitude of online support groups. A group can be found for just about every condition or diagnosis. But just because they are out there doesn’t mean they are helpful. An article written in 2011 for Science Daily stated that after a year of research the participants found less support from Online Support Groups than they did from in person support groups. But really it comes down to what suits your needs best. If you can find a group where you can make personal connections and feel like you can truly open up then you will gain from being part of that group. Whether its online or in person.
If you visit the LFA website (Lupus Foundation of America) you can find a page just for research and information on your condition. There are tabs for newly diagnosed patients, a tab for children and teens, a tab for caregivers and even information for healthcare professionals. This can be helpful for everyone, they can find any kind of information that they are looking for that helps to understand the condition you are dealing with. Also on this page there is a link to help you find a chapter in your area that may have support groups. I was a facilitator for the local chapter in my area for awhile. Sadly, the chapter eventually closed even though I live in the third biggest city in our state due to lack of interest. A lot of people do not even know that groups like this exist. Despite our efforts to spread the word we were never able to grow the group enough to keep it going.
If you are looking for local support groups or informational meetings many hospitals have groups in place. They may not have a group that is just for individuals with Lupus, but there are usually groups in place for things like arthritis or something similar. If your hospital doesn’t offer a group of any kind, you can also check with other hospitals in your area. Chances are pretty good that you can find a local group somewhere near you. You can also ask your doctor for recommendations of any groups that are available in your area.
If in person groups are not for you you can always search Facebook for support groups like I referenced above. If you search for Lupus Support Group, in the Facebook search field you will get at least 50 groups. There are groups for people in certain states, people with multiple diagnosis, people with SLE, or Discoid Lupus. My point is that you can find a group for just about anything. Not all of them will be for you so I recommend trying a few different groups. Personally for me after I spending several months searching for “The” group for me, I still couldn’t find one that really felt like “home.” So I gathered a few of my lupus sisters, who I had gotten to be good friends with, and we started our own group. We named it Lupie Groupies. Over the years since I started the group we have grown to over 600 people in the group. But we are able to keep the small family like feel. And that is important, I think we all need a place to go where you can be open and vulnerable and not feel like you are being judged. If you don’t have that safe feeling you are less likely to really be open or gain any benefit from the group.
The biggest complaints I have heard personally about online support groups is that they are all doom and gloom and full of people who always complain. And that is possible. When you have a major diagnosis that is a major part of every part of your life there will be some gloomy days. If you find a group that you feel is to negative than move on and find a new one. In order to really benefit from a group like I said before you need a place where you can be open and vulnerable. But you also need a place that is uplifting and supportive. Without those qualities you will not benefit from the group.
You also need friends that are supportive and uplifting. That can be more hard to find than a good support group. Honestly, the best friends I have who keep me going are people I’ve never met in person. They are people that I have found over the years in online support groups. They are the people that I can whine and moan to without judgement, because they get it. I don’t have to worry about judgement when they ask how my day was and I am completely honest. To many it seems strange to have friends you have never met, but I am okay with my being people I haven’t met. These women are always there for support and I am always there for them. My biggest recommendation is that you find a good group to join and make friends with some people in those groups. Those are the people who will get you and how you are feeling and truly support you!! I also recommend giving your family and local friends some time. They to are dealing with the life changing diagnosis that you are, they are just dealing with the changes in a different way. They need time to think about, research and get used to the new diagnosis and how it is going to impact you and your relationship with them. In most cases they will come around and be supportive at some level. Some more than others. And some never will get it. But sadly that’s just the way it goes.
The takeaway here is that you need support when you are dealing with a life changing diagnosis. You may not find in the most conventional places like in your family and friends, and that okay. We have to take it where we can get it. Without good support we can’t truly deal with the changes we are experiencing and that can impact your health in a negative way. If you can find a good support group then stick with it. It really be can be life changing.
With Love,
Amber
