Five tips to help loved ones come to terms with Still’s Disease
Still’s Disease will almost certainly have a large impact on your life. There’s no doubt: living day-in, day-out with pain, the loss of your previously good health and battling with medication is not an easy thing to do.
But what about the other people in your life? As people that care deeply for you, your friends and family can often feel helpless, frustrated and left in the dark. It can be destroying to see someone that you love that is in pain, and it can make it even worse if they do not fully understand what is going on and what they can – or can’t – do for you.
These five tips can really help you explain your illness to your friends and family, and set up a supportive framework for them to understand Still’s Disease better and how it will likely effect you in the weeks, months and years to come.
1. Tell it to ‘em straight
It’s very important that you don’t try and downplay the condition. Saying that Still’s Disease is “just a flash-name for arthritis” won’t help the situation. Uncle Tom’s arthritic thumb that aches whenever it is about to rain is not the same as Still’s Disease.
A good way of explaining Still’s Disease to a loved one is to take this four step approach:
1. Start with the basics.
This is the text-book definition of Still’s Disease. You can start by telling them that Still’s Disease is very rare and is an illness of inflammation. It causes your joints to become extremely painful, you can develop a rash very quickly and that you experience night sweats and fevers (and whatever other symptoms that you may experience).
In addition to discussing the illness with them, it’s a great idea to leave some reading material with them – so that they can digest the information at their own speed. The International Still’s Disease Foundation provides free brochures to Still’s Disease sufferers. They can be requested at the website, here.
2. Explain the treatment options
Explain to them that Still’s Disease does not have a cure, but that it is manageable with medication. It’s also important that you fully explain any new medication to them. For example, if you’ve been prescribed methotrexate, tell them that your alcohol intake needs to be significantly reduced. Telling them upfront is much better than sitting at a party looking glum while everyone trying to have a good time and is wondering why you haven’t touched your white wine spritzer.
If your medication has potential side effects, this is the time to tell them.
3. Explain how Still’s Disease progresses
Still’s Disease is often a cyclical illness and this can be a hard thing for friends and families to come to terms with. Explain to them that the illness is worse at different times of the day, and that even after weeks of feeling good the illness can flare suddenly and severely. Explaining this to loved ones can make it easier for them to understand the nature of the illness.
4. Answer their questions
Make sure that you give them an opportunity to ask you questions. Even if you don’t have all the answers (you’re not a doctor, afterall!), it is important that you discuss all of the subtleties of the illness with them. Just imagine if someone that you loved started to avoid you because they assumed that Still’s Disease was contagious!
They will have a lot of questions for you. Be patient, remain rational and talk to them.
2. Explain — in your terms — how you feel
There are definite benefits in first describing Still’s Disease to your loved one in a non-emotional, rational way. This sets up the parameters of the illness, gives you a vocabulary you can use with one another and gives them a basic knowledge of what Still’s Disease is. Once you have done this, though, you really need to step out of the ‘textbook’ mode and into the ‘feelings’ mode.
Explain to them how the illness makes you feel, both physically and emotionally. The term “pain” means different things to different people. Saying that when your knee flares it “hurts” and you “can’t put any weight on it” only tells a small part of the story. Explaining to them that when your knee flares it is like broken glass in your joints when you move it, but relatively pain free when you are not moving is getting better. Telling them that when you start to feel your knee flare you feel scared and panicky starts to give them a complete picture.
They want to help support you through your illness, but they need to know how Still’s Disease effects you, mind, body and soul.
3. Tell them how they can help.
In the eyes of a carer, there really is nothing worse than feeling useless.
Often there is not much that a loved one can do for you while you are in the middle of a bout of inflammation. Often the Still’s Disease sufferer just wants to be left alone, and moans and groans aren’t requests for help. The first thing that you can do to help your loved one care for you is to tell them when they can’t help. Explain to them that it is okay just to leave you on the couch and not to fuss if you are in the middle of a flare-up. If you tell them this before the fact, they will have a deeper level of understanding when they are trying to make you drink a cup of tea and you’re telling them just to leave you alone.
After telling them how they can’t help, tell them how they can! Supporting someone with a chronic illness goes much further than just helping when they are experiencing physical pain. As a sufferer, you will need someone to talk to, a shoulder to cry on, someone to pick up your medication once in a while, someone to go to the doctor’s office with you, someone to keep you on track with your medication, diet and exercise.
Whatever you need support with, ask for help. While this is difficult for some people to do, it is important for you to do so – and you’ll find that it is very important for your carer in order for them to feel worthwhile.
4. Work out the details.
Having a plan makes living with a chronic illness so much easier. If you are having this discussion with your spouse, sit down with them and list out all of the ways that your illness will effect your family life and start to form contingency plans. Here’s a few things that you may want to consider to start you off:
– Budget. Still’s disease medication and treatment can be very expensive. Work out ways that you can trim the budget to accommodate your medical costs while avoiding getting into debt.
– Hobbies. Were you both avid rock climbers before you got sick? Use this time to define your limitations and think of other ways you can be involved with your hobbies and activities without having to give them up.
– Vacations. Even though money may be a bit tighter now that you have Still’s Disease, now it more important than ever to take vacations. Being sick is stressful. You need to make sure that you are allocating quality time to devote to rest and relaxation with your loved ones.
– Work. Will you need to stop working, or need time off from work? Discuss with your partner options and strategies to accommodate changes to your life relating to your employment.
5. Enough about you, let’s talk about me.
If you follow these tips, your loved one will have a pretty good idea by now what Still’s Disease is, how you feel about it and some of the impacts that the illness will have on your shared life. But how are they feeling?
Your loved one will no doubt have a whirlwind of emotion flying about. As much as your life will change, so will theirs. Are they feeling hopeless? Angry? Frustrated? Scared? Encourage them to talk to you, and even though it is going to be really tough on you to live with this illness, don’t think that it is easy for the carer, either!
Managing Still’s Disease will not just be a challenge for you, it will also be a challenge for your friends and family. Focus on sharing the load and support them in supporting you.
The real secret to getting your friends and family to come to terms with your diagnosis of Still’s Disease is open, ongoing, two way communication. The people that are successful in managing Still’s Disease are the ones that have a trusted support network and share their feelings with their friends and families.
How did your friends and family react when you told them that you had Still’s Disease? Please leave a comment below.
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