Spouses, Significant Others, Children & Family: Need Support
Written: Deb Lundquist
May 13, 2017
One day your loved one is happy, fun, and full of life. They are doing everything they usually do and life is fine.
Then in a blink of the eye, they are someone you don’t even know. They look the same, but all they do is lay around on the couch or in bed. They cry a lot. They don’t cook like they did before or at all. They ask you to do things they used to do and you don’t know why.
They don’t go to work anymore or if they do, they take a lot of sick days, or they come home, crying and go straight to bed. They are on a lot of medications that don’t seem to do anything. They forget things all the time, they say things funny like they can’t think of words or their words are really slurry like they are drunk. They don’t want to go anywhere and have fun. They keep cancelling events with their friends and you keep making excuses for them and it is embarrassing.
You don’t know what to do to help them, yourselves or your family. You are afraid of now and the future and you don’t know where to go for help or even if you want to help. Well if you are married, I want you to remember two things. This is the same person your fell in love with and the one you promised for better or worse, so you need to stick around and keep that promise.
However, you are the forgotten.
You are the ones who are the truly invisible. The ones who need the support the most because you are the ones who really feel that you are the only ones dealing with these issues.
Let’s correct that one misconception. You are NOT alone! There are millions of you! However, there isn’t a good support system for you. That is truly a shame and needs to be fixed.
We can address some problems here, however, and try to help you understand what is happening to your life and the life of your loved one. You haven’t lost your loved one. They are still in there. It is just they are stuck and don’t know how to get help themselves. They need your help.
1. First, it’s called Fibromyalgia and it changes everyone’s life forever. You have become a caregiver, not something you ever thought you would be until you were old, but there it is. Life isn’t always fair and never promised to be. You need to lean heavily on your faith if you have any.
2. At first, it seems never ending and like your life has taken a turn into hell. Hang in there and be strong for both of you. Research and talk about it together, because as frightened as you are, your spouse is even more frightened. You need to keep communication open and the two of you need to stay tight as a unit! I buried my head under the covers while my husband did the research. When he came into the bedroom to tell me what he discovered, I said, ‘all I want to know is, is it going to kill me?’ His answer was, ‘only if you let it.’ That was enough to get my attention. And no, it isn't going to kill you.
3. Second, your spouse needs a Team to help her/him to get through life with Fibromyalgia and you need to be the second person on that team. They are the first. In order to do that, you need to educate yourself, you need to get plenty of rest, you need to believe everything your spouse is saying about how they feel because they aren’t lying and you need understand that. That will lessen the stress between the two of you and will help with your communication and your research, even if what your spouse is saying sounds crazy. It isn’t. I asked my husband what advise he would give you and this is exactly what he said, ‘Listen, Listen, Listen. Even though your life is turned upside down, their life is worse and no matter what, you have no idea what they are really going through. So, listen and believe everything they say.’ Go to the Doctor with them so you can get a little bit of understanding of what is going on and if their Doctor isn’t listening to them, help them get the right kind of Doctor and one that will help them.
4. You need to find support for yourself. Positive support! This is extremely important for you! You cannot allow any negativity in your life or your spouses! It will tear apart your marriage! So, you need to educate your extended family and if they will not believe in what you are saying, don’t let them tear down your spouse! That will only cause more pain for both of you! You need to stand strong for the both of you, that includes parents, siblings, aunts, uncles and cousins. If you keep trying to educate them and they simply won’t listen, walk away. It isn’t worth the pain to keep trying to talk to a brick wall that isn’t going to listen.
5. You may need to start seeing a psychologist yourself to help you through these hard times. It can cause depression for you as well because you will go through a mourning process too. You have lost a part of your life and entered a new chapter and it isn’t one you ever envisioned. Your children may need this kind of help as well.
6. You need to educate your friends and your pastor because they are going to be part of your support system. Unfortunately, you’re going to lose some and that is going to be painful. However, again like I said in 4, you can’t allow negativity in your life or it will destroy your marriage. Those that stick around were your true friends anyway. The ones that leave, were never your true friends. You may even have to change churches. We did.
7. Sometimes, a lot of the time, your spouse is going to cancel on events you were going to do together. It is inconvenient, but can’t be helped. We never know even one hour to the next how we are going to feel. I know sometimes I would will feel great and the next, I would will feel so exhausted that I just wouldn't know if I could sit up any longer. It is incredibly disappointing to us when we need to cancel and we feel just awful when we see the look on your face when we tell you we can’t go yet again and you have to go by yourself. Sometimes you go by yourself, sometimes you stay home, sometimes we cry at your disappointment, but you need to understand that we can’t help it. Please don’t make us feel guilty or blame us. We know it can be very frustrating for you. You can make one of two choices; one is to stay home and spend quality time with your spouse. The other is to go and spend some quality time with family or friends, explaining to them that your spouse’s sickness didn’t allow her to come. Do not feel guilty. You need to have time away sometimes. You do need to have fun without feeling guilty. However, don’t be gone all the time, leaving your spouse alone constantly with no one at home.
8. We appreciate everything that you do for us even if we don’t tell you enough. You have had to changed roles and yet, you do it anyway and we want you to know that we recognize everything you do! We didn’t ask for this and we would rather be the one doing the things we are asking you to do. We try to do the things that we can, but we have no energy plus when we try to do things it increases our pain.
9. It is nice to date. It is fun and your spouse loves that too. If your spouse can’t leave the house, bring the date to your spouse. Set-up a nice table, if you have to by the bed or couch. Put a tablecloth, flowers and nice china on it. Play soft music and if you don’t want to cook, get takeout from a nice restaurant. Then after you eat, watch a movie together. Have a date every week or two to keep the romance and love alive.
10. Make sure you tell each other that you love each other all the time and tell them that you still think they are beautiful/handsome and that they are very important to you. At this point, they don’t think they have any meaning left in life and they don’t think they are lovable anymore.
11. Get your spouse out of the house as often as you can. Otherwise they get cabin fever and that deepens their depression which makes it even worse for you.
12. Do things around the house that you enjoy, like a hobby or something. We have a very large yard, 3 acres. My husband says he likes to mow because that gives him time alone to just veg and be by himself without interruption. He says it is his form of therapy, just him and God. My son does leather work.
Please make sure you get support for yourself and make sure your spouse knows you still love them and they will let you know they love you back. If you stay together as a unit, nothing can tear you apart!