Whos responsibility is it that the family can function despite a chronic illness?
From the view of having a chronic illness myself and going thru a lot of therapy; it is the family of the ill person own responsibility to look for the help they need.
From the view of reality I know that the families aren’t able to see they selves that they’re not feeling well, their understanding of the illness and the symptoms that follows aren’t there.
How to deal with it
As I mentioned before, it’s crucial that also the significant others gets the help they need.
You can’t get rid of the pain you, as being family to someone with chronic illness, are feeling. But having someone who’s not afraid to stand there by your side when all thoughts, feelings and emotions spills out from you is a really important. To help you thru the crises.
Not all of us, or rather – many of us – don’t have a friend or a spouse to express all their emotions and thoughts to.
In many cases there can be family members or friends that you can talk to, that are willing to stand by your side in this rough time. But you don’t want to ‘bother them’ with your feelings or you want to appear to be a strong person who finds solutions and adaptations that takes you through everything. Especially if it is your spouse, child or parent who gets sick you may feel the need to be the strong one.
I know, we are many who are sick who takes the role of being the strong one, but this post are to all who has the role of being family to a sick significant other.
I can tell you, from my own experience, that it’s impossible to keep up that fasade forever. Sooner or later there’ll likely be a collapse for you. But please remember; for us, we who’s got this chronic illness, it is really, really important to us that our significant others are feeling well! You want be able to help us if you’re not feeling well.
Being spouse to one with MS or other Chronic illness
Actually I just found a really short text that included the basics when it comes to being a spouse of someone with MS from Very Well Health. Really recommend you reading it.
On the Swedish Neuro association homepage they also points out the need of offering therapist to those who live with someone with a neurological illness. That the families should know where to turn if in need of some sort of homeware. Also that the families of the ill person gets time for doing what they love. As I said before; if the families of someone with an illness don’t take care of them selves they won’t bee able to support the ill. You, as family to someone ill, need have respect for your own, as for the ill ones, mourning reaction. (If that’s a way of putting it in english…) I know that families to someone with cancer should be given the same abilities too.
- Don’t be afraid of asking extended family and friends of help. They probably understand why you’re doing that.
- Put up boundaries of what you have the strength to do or don’t.
- Eat and sleep as regularly as possible.
- Do things that makes you happy and meet friends.
I know that these tips are easier said than done, but talk about this with your spouse and extended family and friends and your boss. Together you may find a solution. It’s so easy that you, as a spouse, feel alone and get bitter over your situation. Remember: there is help out there. In some sort of way.
As a spouse of someone with chronic illness you can always call the clinic that takes care of your spouses illness and ask if they have advices or other sorts of help for you!!!
Being child or a parent to someone with MS or other chronic disease
In Sweden many hospitals are able to offer support with and to children of someone with a chronic disease thru therapist specialist in children. I know I brought my kids to my MS-nurse so she could explain to them about MS. Somehow the fact that me myself was a nurse didn’t mean a thing to my kids… But it’s like that when it comes to all illnesses; from a running nose to a pimple – If mama says it’s a cold or if she says it’s a pimple it doesn’t matter. They needs to hear it from someone else… Just for me to accept that it’s how it is 😀
Parents to children or teens are most of the times there when their children gets the diagnosis. But they are, if handled correct by the healthcare, offered a therapist when needed.
Being a child or a parent are difficult roles! When it comes to the children of someone with a chronic illness you can’t just say “it’s up to the children to get help when needed”. Even if you’re the one who’s ill you are still the one who’s responsible for the kids, but if you have a partner they should help you out with the observations of your kids feelings or emotions.
Being extended family or a friend
I’m sorry to say that but if you need help of how to support someone with a chronic illness or your own emotions – it’s your responsibility to get help. I can’t speak for all persons with a chronic illness, but for me, what I wish of my friends and extended family is that they talk with me if they have any questions or thoughts about my illness or how I wish to be treated. What I can and cannot do. Etc.