Chronic illnesses and chronic diseases don’t just affect the person who is poorly but their loved ones are also part of their struggles, story and healing journey.
These illnesses are not your common cold, they are deeply complex. With many layers and require more work, time, research and resources. If you are willing to be there and ride the rollercoaster alongside your loved one then you are one special person, a hero. Many would fall at this first hurdle. Daunted by the work and complex nature of this battle. You are not celebrated enough for your dedication to the fight and support by the outside world. Just know that your loved one is truly grateful and acknowledges all your efforts!!
Now you know you want to fight with us the next question is how can you? So here are a few pointers:
1. Emergency contacts: have the number of the family member you need to call if you need anything and of course keep doctors and hospital numbers handy in your contacts. Don’t alarm your loved one by asking for their family’s numbers just explain you may need them if you can’t get through to them regarding plans etc. If they think you are worried about being with them they may isolate themselves not wanting to be a worry to you.
2. Be organised: planning is key. Whether it’s organising events in advance. Finding out where the best car parking places are for your location, if there is any need to take medications, checking out restaurants or arranging transport ( walking aids, wheelchairs, public transport ). It’s not a simple get up and go operation.
3. Try your best to learn & understand as much as you can: from medications, what medications are for what, what symptoms your loved ones suffer from, what treatments entail and more. Your understanding won’t only put your own anxieties at rest but your loved one will feel at ease and safe in your company. Meaning even if they don’t feel their best they too are more likely to push themselves and make the effort for you knowing they will be looked after.
4. Be positive as much as you can be: even if your loved one is unable to attend, having a relapse, are irritable and lashing out. Try to make light and a laugh of every situtation that seems negative. The last thing your loved one needs is for you to highlight the negatives- that maybe they did cancel, they did have to stay at home, their pain levels have increased. They want to hear things like, ‘Don’t worry we can try tomorrow.’ ‘We can have a night in.’ Or for a joke to be cracked.
5. Research: knowledge is power, and we never stop learning because everything is always changing and moving on. Know your stuff and keep up to date. This doesn’t mean to say you have to subscribe to magazines of the illness or read 500 page books. Just the odd article read, research on testings and treatments and learn the basics. This will help your own peace of mind as you will be more equipped to help and advise your loved one. Your willingness to learn will also mean so much to them.
6. Learn indicators: whether this is learning how long your loved one can realistically be out of the house for, what they do when their pain is heightening, what times of the day they function best at and when they are becoming tired. The list goes on. Some signals may be;
- sitting down
- becoming quiet or withdrawing from conversations
- rocking
- massaging joints
- looking disconnected and (brain fogged)
- change in mood
Everyone is different so you really need to take the time to learn these inditators. You can ask your loved one about giving you a code if they are struggling to cope and you can also ask family members if they are aware of any indicators.
7. Baggage: expect a boot or car full when travelling with a loved one. Whether it’s extra food, cushions, clothes, walking aids etc you may need the space to accomdate these.
8. Plan B, C and D’s are always good: always have back up. It’s heartbreaking for sufferers to turn down or cancel plans. Always offer an alternative, even if the alternative is still too much for your friend they will feel so much better because they will see that you understand and you are willing to give up your plans to still include them!!
9. Presence: sufferers love to isolate themselves and hide away when they are at their worst because they don’t want to hurt others and/or be a pain to them. So even if a home visit, a trip out or an event is too much for your loved one a phone call or even if their throats are too sore or brain isn’t as sharp as they would like to make conversation a message means the world to them. They know that you were thinking about them and really do care. That just because they have been silent they haven’t become invisible.
So many chronically ill people feel invisible. You have the power for your loved one not to feel this way.
I hope this post helps and gives you at the very least a starting point.
And thank you for being a hero and so willing to be there for us. We are forever grateful to you.
Enjoy a lovely bonfire 🔥 weekend and I hope it’s the best it can possibly be.
Love always
S
Xoxo