Another painful part about this life is the difficulty trying to resolve entertaining people at home and yet struggling to do so; especially those wonderful people I would like to see and be around.
Over the past decade the number of visitors and guests we have had in our home have declined considerably such that it is rare to see anyone come to our home aside from the postman and door to door advertisers.
It is hard to explain to people, especially people that you love, that most days it is a real struggle to even move let alone entertain friends and loved ones. I often don’t want to be seen at my worst because of the embarrassment I feel about many of the physical issues I live with. I know I shouldn’t and that only makes me feel worse because I do.
It would be wonderful if people who visited me were instantly comfortable enough that they could fix themselves a drink, lounge around beside me, and look after themselves whilst we spent some precious time together but it is highly unlikely that people will do this, and I don’t blame them at all. However I often don’t have the strength or ability to fetch refreshments, keep conversations lively and stimulating, and entertain people as I would dearly like to.
The truth is that with these illnesses you either have a small group of amazing people who will make themselves at home and become in tune to your physical abilities or you live a life of isolation and loneliness.
Today I have a handful of people whom I can rely upon to feel completely at ease and have this amazing ability to gauge “the room” and know exactly when to chat at length or cut short their visit and let me rest. They are not shocked by tremors, tears, aches, blindness, facial droop, slurred speech, fatigue or general malaise. They don’t care if I am in my best dress or in my pyjamas. They don’t care if I talk a little or if I just listen. And they don’t care if we are sitting in the garden or holding hands while I lay in my bed.
Those few people are just pure gold to me.
There is no handbook whereby people can learn how to visit with an autoimmune friend and so I never blame people for feeling awkward and opting out of visiting altogether. I think it’s often best to not visit if you are not really committed to understanding their situation a little better. For the purposes of helping both parties I thought I might write down a few handy tips and suggestions.
1. Call first. This is essential. There is no point in dropping in on a chronically ill friend/loved one unless you both want to be disappointed. Call first and be comfortable with a “sorry, not now” response. Better still, text the person so they don’t have to speak if they are not up to talking or if they feel awkward about saying no. The truth is that your chronically ill friend really does miss you and it hurts them to have to say no, I guarantee it!
2. Intend on keeping your visit short unless your friend can manage more time with you. It is very hard for healthy people to understand that speaking, listening, concentrating and participating uses a lot of energy and this is something that most chronically ill people have very little of. Almost none. After half an hour of Interacting it can start to take a real toll on the person and pain and fatigue can start to overrun them.
3. Be comfortable at making yourself at home. Often it is beyond the abilities of the ill person to fetch and carry drinks, snacks and showing people around, therefore it is so important to just try to make yourself at home as much as possible and be self catering. Your sick friend will be immensely appreciative; more than you can ever know.
4. Don’t feel as though you need to talk about illness or anything health related. We live all our lives with these challenges and struggles and for a short time we would like a break from discussing them. A polite “how are you feeling today?” Is sufficient and a good way to gauge the time you may have together. I for one hate retelling my health struggle over and over so I much prefer to just not think about it for awhile and just hear all about another persons reality and news. That’s my personal preference anyway.
4. Don’t make future plans with the person as often times they can become things that can break the persons heart if health is not going their way on the day. I can’t tell you how many times I cried from breaking plans with somebody and then took months to get over the pain of it. Such things can trigger depression and feelings of inadequacy in a second. Simply say something like … “it would be nice to go to the movies one day when you are up to it,” … this is more likely to make the person feel included and valued.
5. Check in regularly to see if the person is coping during the visit. A quick “are you feeling tired?” Is the best way to gauge how your visit is going. If your friend says “yes, I do feel tired now” don’t take this personally or consider it a rejection. Half an hour with you is probably a treasure that your friend will not forget in the days (months) to come and you may even be what keeps them going through the most painful times in their struggle. It may be just a visit to you but it can mean the world to them.
6. Learn to be completely honest with your ill friend. Speak honestly and openly about your friendship, your challenges, your lack of understanding, your life, anything. Openness is the tool that will ultimately help you navigate these times. Illnesses which change a persons life forever are not for the faint hearted and take a lot of courage and honesty to get through. I have found that I must always be honest and I can no longer tippy toe around subjects or issues anymore. I simply don’t have the strength or energy. This can either solidify a friendship or break it depending on the bonds you share and only time will tell you both which way it will go. I, personally, have lost a lot of friendships and relationships that I thought were stronger and deeper but I have learned over time to simply let it go and try to find peace at each stage.
7. Try to find the value in your chronically ill friends other abilities other than their physical ones. Constantly needing your friend to be physical, do things for you, go places, and measuring them against a physical standard is a painful and cruel thing to do to someone with disability and struggles. It is kinder to simply let the relationship dissolve than to require things they can not give anymore. As a society we tend to overlook the other aspects of a person outside of their physical abilities or attributes and illness hold a microscope to this very quickly. Friendships with the chronically ill must be based on deeper things like personality, empathy, feelings and appreciation beyond what they can or can not do.
8. Remember that a visit with a friend can mean they will need days to recover. Every little action and interaction has a physical toll. Every action. Every day. If your chronically ill friend or loved one is prepared to hurt, suffer or struggle just so they can spend time with you please, please, please see this as the great honour and act of love that it is. You simply can not put a price on this kind of gesture. It is worth more than a hundred visits with healthier friends.
9. There is nothing better than laying in bed with a friend and watching a movie or documentary with someone when you are chronically ill. If this is your idea of heaven too then make friends with an autoimmune fighter and you will have a friend for life.
10. Even if you don’t see your friend very much anymore always remember that they are missing you as much as you are missing them too. Sometimes more.
I hope these simple suggestions will be helpful the next time you have a chance to visit with your chronically ill friend and I wish someone had told my friends and loved ones these things over the past decade or more.
It is hard to have your friendships and relationships change when you have a chronic illness and it is always very hard losing friends but it is worth more than words can say to have the right kind of friendships that will last through all the ups and downs and make the struggle a little easier.