The best word used to describe what it is like living with multiple illnesses is isolating. It is isolating because very few people understand what it is like living with a whole range of illnesses. It is isolating because you are not necessarily in a position to work, and have interaction found in a workplace. It’s isolating because after awhile you stop being invited to things, as you generally can’t turn up, so people think there is no point inviting you. It is isolating because friendships disappear, as you are no longer in a position to go out and see people. You know that the friendships that remain will last a long time, because these are the ones that have stuck by you.
Living with multiple illnesses is isolating because no one will ever truly understand what your life is like. They simply won’t get it. They may have one of your conditions but they don’t have another, so they get what life is like for you with that condition, but not necessarily understand the additional pain and complications you suffer as a result of another condition. It is difficult for anyone to walk along side you, and equip you for what lies ahead, because no one knows what lies ahead.
You might try and describe what your life is like and the challenges you face on a daily basis, but you are always going to receive a mix response by doing so. Some will be empathetic, some will listen, and some will continue to remain ignorant of the difficulties you face. Some will understand, some will want to help, and some will move on and pretend that conversation never occurred. But regardless of the response at the end of the day, you are left in the same position of feeling isolated because no one truly understands what life is like for you. The reality is that people can only do some much to help you in the situation, but you’re the one who has to walk through it day in and day out.
Most people have the opportunity to go to work or study, and therefore, the opportunity to form friendships with colleagues and fellow students. They might decide to go out and have drinks after work, or get together on the weekend. More often than not, people are not just working together but developing friendships. But those who are at home unable to work given multiple illnesses miss out on forming these friendships. The most interaction they might have with people during the week is with medical professionals and support workers. But it’s not just the weekly social interaction that people miss out on because they are not in a workplace, but they’re also missing out on other opportunities of socialising at different parts of the year. Christmas and New Years are a prime example.
The Christmas and New Years season is the most isolating time for people living illnesses. There is a mass exit of people from the city who can afford to go on holidays during this season. Medical and support services tend to shut down for a week or so, and they are left unable to attend the routine appointments. The people they may have the most contact with have gone away on holidays and they are left hearing from those who remain in the city how busy the December month has been because of all those Christmas parties they’ve attended, and the numerous New Year’s Eve functions that they’ve been invited too, and yet to decide which to attend. But people at home with multiple illnesses don’t have the same social network, and so often spend this time isolated at home. In fact, this season is one of the busiest times for psychiatric hospitals, as people with mental health conditions are aware that this will be an isolating time for them. They know that this isolation will put them a greater risk, and may choose to spend this season in the safe environment of a hospital rather than experience the pain that occurs when one is isolated and in the midst of a mental health episode.
So the question remains, are you able to open up your home or party to someone who may be isolated over the Christmas and New Year season?
However, it’s not just Christmas and New Years Eve parties that people with multiple illnesses tended to miss out on, but invitations to parties and events all together. In fact the sicker one gets the less invitations are received to do anything. It’s really sad and lonely, and it’s horrible to think that people are simply not inviting one to places because they are sick, and making the assumption that the person won’t come. Or may be it’s because they don’t want to be dragged down by the sick person or have to look for ways to modify the activity for the person with a disability. Whatever it is, it’s a sad fact of society that seldom do we invite the sick. We know that it is a factor of sickness, because prior to getting sick one had an active social life. It’s just unfortunate that the more one has to say no to things, the less people are willing to offer invitations.
But it’s not just invitations to events and parties that decline, but catch-ups with friends can decline too. You’re no longer in a position to travel long distances to see friends. They may make the effort for awhile to continue to see you and you try not to talk about the challenges your facing living with multiple illnesses because you know people generally don’t want to hear it, but then your friend starts to think your shutting them off form your life. So you start to open up about the challenges, and they find it all too much to handle and don’t know what to say or do, so choose to ignore you.
For me personally, thankfully I have been blessed with a handful of friends who have remained with me through thick and thin. Each of them have gone through seasons where the friendship is not as close as it once was because they have needed a break from the relentless dramas that come illness. Or they have moved away and the friendship remains but it becomes more of a digital friendship based on text messages or phone calls. For each of these friends though I have learnt through great trial and error how much they can handle and scale my level of detail or simply not inform them of certain aspects of my life, not because I don’t want them to know but simply to protect them and preserve the friendship. I am so thankful to the few that have stuck by me, some since childhood, which means they’ve gone through all the illnesses. To these few, our friendships have certainly stood the test of time amidst some great difficulties.
If you want to support someone battling illness but finding it all too much, take a step back but don’t walk away. Allow the individual to work out what you can and can’t handle, and let them adjust the nature of your friendship accordingly. Try not to give up on the friendship, and keep inviting them to things because you never know when they might surprise you and themselves with enough energy to attend that day. They also really appreciate the fact that you thought of them, even if they are unable to attend.
For those who are Christians and are experiencing the overwhelming sense of isolation that comes from illness, remember that there is One who will never walk away from you. Jesus experienced the greatest isolation by becoming separated from His Father, by dying on the cross for us, so that we are never isolated from the Father. Psalm 23:4-5 reminds us “ Even though I walk through the valley of the shadow of death,I will fear no evil,for you are with me;your rod and your staff, they comfort me”. Hope is found in our circumstances when we remember that “Surely goodness and mercyshall follow meall the days of my life,and I shall dwellin the house of the Lordforever” (Psalm 23:6). Through the long days and the dark nights He is there. He is always with us!