For Friends and Family
When someone you care about is diagnosed with a chronic illness, especially one for which there seems to be little in the way of cure and/or management, it can often be challenging to know how best to support them.
It is likely that person will be experiencing a range of emotions, from anxiety to a sense of loss; depression to guilt (many people wrongly blame themselves for the onset of illness). Everyone deals with these feelings differently, and you may find that your friend or family member either bottles them up or talks about them at length.
However you and your loved one relate to their condition, you relationship is bound to take on a new dynamic, and you may at times feel like you don't know how to support that person.
While neither of you can solve the person's health problems, there are which in which you can help. From signposting to active listening, I've put together a top five:
1. Self care
It may seem anathema to put self care at the top of a guide to supporting someone else, but spread yourself too thin, and you run the risk of taking on too much. Try to avoid statements like 'I am 100% here for you' as that can set a false precedent: you might end up feeling like you are unable to be available to that person as much as you/they would like, and end up having to step back, which can sometimes feel like a rejection.
Instead, consider how you can realistically support them, in line with your current commitments and relationships. You could offer to call them once a week at the same time, and let them know in advance if you need to rearrange the time. If you live with the person, you could put aside a couple of times a week to help them with planning, if that's what they need; for someone with a chronic illness, liaising with doctors and sorting finances can be a daily battle, but be boundaried in how often you can offer your support with that. It sounds harsh, but setting aside specific times can mean you are more prepared, and the quality of the time you give will be better.
It is important, for your own health, that you try to keep doing things that make you happy. If you live with the person you are supporting, and are restricted in how often you can leave them, it might be worth starting with small goals, and thinking about ways in which you can realise them; if you used to go camping for the weekend, for instance, consider what you enjoyed the most about the experience - the outdoors, the social aspect, cooking outside - and think about how you could incorporate one or two of those elements into your life, perhaps on a scaled-down basis. For example, could you go for a two-hour walk every other Saturday, and organise for someone to take your place at home?
Likewise, consider what you and your friend/family member used to like doing together, and think about how you could keep doing that in a way that suits your loved one's needs. The person you support will be the best judge of that; try not to make assumptions based on how you conceive of their condition. That way, your relationship has some consistency to it.
You can't solve your loved one's health condition. Suggestions as to what could be behind the illness, or medications or exercises they could try, are made with the best intentions, but unless the person wants to actively explore these areas with you, the chances are, they've done their utmost to delve into the whys and wherefores of causation and treatment.
Sometimes, the person might just want to talk. Being diagnosed with a long-term, debilitating illness can be a frightening experience, especially if you do not know if it will get worse, and if there is no cure. People often feel they just need someone to share their fears with, and suggesting they try x, y and z can belittle these feelings, and send the message that they ought not to be shared. Listening to your friend and validating how they feel is sometimes all that's needed, but note that listening is key; if your friend is saying they want to know what they can try and are open to all suggestions, meet them where they are!
3. Don't say 'I get tired, too'
Chronic pain and chronic fatigue are not the same as pain and fatigue. Yes, people with chronic illnesses do not have the monopoly on these feelings, but the difference is, when it comes to chronic pain and fatigue, there is no let up, no amount of sleep and/or medication can relieve it, and it can severely impact the person's life to the extent that they are often unable to work or keep a house going. A friend of mine with multiple sclerosis was telling a colleague that she was constantly exhausted as a result of her condition, to which that person replied that she was 'knackered, too.' Unless you are seriously worried about your own health and feel you have a lot in common with your friend/family member, empathise, don't relate.
4. Be open about your limitations
If you feel you are out of your depth, or you don't know anything about your friend or family member's illness, be honest. Don't pass off what you've heard about the condition/what you think you know as fact; preconceived ideas are very often at variance with someone's lived experience, so be prepared to learn from them. It can be helpful to say something like, 'I'm afraid I don't know much about that, but you tell me how you experience it, and what you've learned, and we'll go from there.'
It can often feel natural to reassure the person that they will get better. This carries both pros and cons. If that is where the person is, roll with that; again, meet them where they are. If they are telling you they're afraid they won't get better, don't disavow that concern; the nature of the person's condition may mean that they will live with it for the rest of the lives. If this is the case, your role as a supporter will centre around helping them to accept their condition; assertions about recovery can sometimes feel abstract and unempathic.
If you are struggling with the nature of your conversations with your friend, try to be as open as you can without coming across as rejecting. You may not know what to say if your friend talks about how low they are feeling, or if they want to die by suicide, and silence can often feel unsafe. Mind and the Samaritans have lots of useful resources on what to say/do if someone opens up about mental health problems and suicide. If you find yourself in that position, always take it seriously, ensure them that you love them and you are very worried about them, and encourage them to talk to someone whenever they feel close to harming themselves; be open about the fact that you may not always be available, but help the person to consider who else they might feel close enough with to talk to, and mention that there are services they can call, such as the Samaritans. You can also offer to accompany them to A and E, and/or organise an emergency appointment with their GP.
5. Don't forget about them
Your best friend is still your best friend, as you are theirs. Elements of your relationship are bound to change, but that doesn't have to mean a total end to life as you knew it. The two of you just need to be creative in how you spend time together.
Ask the person what would help them. If the two of you used to love walking, ask the person to tell you what would help them if you kept that going. They may have to rest every ten minutes, or only choose places with level ground, or nearby toilets. If you plan this in advance, this can often make it easier for the person to consider their needs; it can sometimes be difficult to communicate what you need on a day out, as you may feel under pressure to 'power through' for the sake of others. If your loved one is housebound but you used to love going out for meals, ask the person to tell you if/how they'd like to keep that going. Could you light a candle, order a takeaway from their favourite restaurant and invite some people over?
As I mentioned, it's important to let your friend/family member be the judge of their own preferences and limitations. Let them tell you what they are able/not able to do, and be aware, this may be more/less depending on how they feel on the day. Just because your friend had the energy to go clubbing last Saturday, it doesn't mean she can leave the house on Wednesday. Sadly, chronic illnesses don't work like that!