I know first hand how difficult it can be for some people to maintain a relationship with someone post diagnosis. Some friends and family members stopped talking to me after I was diagnosed. Some have admitted that it was too difficult for them to support me, and that they had no idea what to say to me. At first I found their honesty frustrating. They had just assumed that it was too hard without even trying to talk to me once post diagnosis. As a young adult, I understand that other people my age may not have the experience or wisdom yet to know how to best support a friend with an illness. Even elders can lack this wisdom. The special kind of compassion and patience it can take to support a friend through a journey like this is not universally taught.
I recognize the unique set of challenges that supporting a friend with an illness can entail. I wanted to share what I have observed through my own challenges in the chance it can help provide insight to anyone else in a similar situation. It is okay not to know what to do or say sometimes. Illness can be a very difficult thing to face.
1. It is Okay to Just Listen
I have recently learned that I have been very guilty of making this mistake. I have a friend who struggles with mental illness, and we often discuss what we are both going through. Because I want to help, I have tried to offer advice in the past. It took sometime, but I have finally learned that sometimes it is okay to stay silent and just listen. Listening is often the best way to support someone. Your friend may not be looking for advice, but just someone to share their ups and downs with. Sometimes advice, even given with the best of intentions, can be counter productive. A solution that may work best for me may not be something that works for my friend. If you find yourself stuck in a situation where you have no idea what to say, it is possible that you are in a situation where it is best just to listen and offer your support. I think it is in most of our human nature to want to make things better. We desperately try to think of words and advice to help make things better. Unfortunately, there are certain situations where words simply fail.
I have had 'healthy' people try and give me advice in an effort to help. Even with the best of intentions, their advice is often impractical for my situation. As you can imagine, it can be a little silly to get advice about being disabled from someone who is healthy, works full-time and can go up a flight of stairs without getting short of breath. I remember a lot of friends and family trying to comfort me during my lowest of lows after I was diagnosed and was on oxygen nearly 24/7 for over a year. To say I was depressed feels like an understatement. In an effort to comfort me, many friends told me how they would backpack across the world if they found out they had a life-threatening condition and how I should see the world while I could. That is an absolutely lovely idea, but it is also unrealistic for a lot of people facing life-threatening illness. If you can't climb a set of stairs, how would you backpack across the world?
2. "That Sucks!"
This is very intertwined with tip number one. I think having a positive attitude can help alleviate some of the suffering that we are in control of. However, I don't think it would be human to try and ignore other feelings like sadness, disappear and disappointment when set backs happen. I also think that it is important for the person who is facing an illness (like Pulmonary Hypertension) to try and find the bright side in situations for themselves.
When another person tries to point out the bright side it can sometimes feel like their struggles are being undermined.
Again, I think it is human nature to want to help and trying to find the positive can feel like the right thing to do. It can be a good way to stay positive, but it is important to know when it is okay to be positive and when it is okay to be realistic. A friend or family member certainly goes through these struggles and set backs with their loved one who has an illness, but their struggles are different than the person with the illness. It can seem easier for a 'healthy' person to try and point out the positives in a negative situation because they usually cannot relate to what is physically going on. When things suck, it is okay to admit that things suck! It is totally okay to agree with your friend about their day or situation sucking.
Being positive, and looking for the bright side isn't a bad thing but be sure to be mindful of the situation. For example, pregnancy for women with PH is strongly advised against. It is very unlikely that I will have children of my own because pregnancy for women with PH has a high mortality rate. Sometimes, in an effort to be supportive, my family will say "you never know- maybe someday." I would rather have them agree that the situation sucks like my good friends Beavis and Butthead. Having them say that it is still possible, when it isn't, sort of feels like they aren't on the same page as me which I need in order to have their support. If they still think something is possible when it isn't, they cannot understand my loss.
3. Neutral Ground Hotel
If you got this reference we should be best friends. If you didn't, lets just pretend number three is just called "Neutral Ground." This may seem really obvious to some, but you can still talk to your friend the way you did before their diagnosis.
What did you used to talk about? The Bachelor? (I think Cailia is going to win.) Making a Murderer? (I am two episodes in- don't tell me anything!) You can certainly still talk about those things. Those are your interests that you probably bonded over together in the first place. I don't always talk about being sick, nor do I want to. I have only certain people that I talk about it with or share so much with. Talking about things too much can also make it more difficult to get over what is happening, and can make me relive a bad event too many times. Sometimes I want a nice distraction! I want to go out with my friends and have a good time. For me, this means that I enjoy their company and we talk about the things we used to and have a good laugh. (A good cry is okay too!)
A lot of things can change after diagnosis. I know that I have changed, but I still really appreciate and value catching up with a good friend over a cup of tea. It is something I did before that I can still do, and really enjoy! You can still enjoy parts of your friendship that you used to have, and still have.
4. Put Oxygen on Yourself First
I have only been on an airplane twice in my life. Once to go to Montreal, once more to fly back home. (I watched Lost too many times and cried during take off, but I felt like a bad ass flying home by myself.)
It turns out flight attendants don't actually give you instructions anymore on how to survive a catastrophic event on an airplane. Instead, you watch a movie. I learned that if you want to survive a crash, you must put an oxygen mask on yourself before you can help anyone else. If you run out of oxygen, you won't be able to help other people. This might feel like the most challenging step for a lot of people, but at the end of the day everyone needs to practice self love and care for themselves.
Supporting someone through a difficult situation like illness can be very challenging. It takes very selfless, caring and special people to hold our hands through these hard times. Sometimes people feel selfish for having their own needs, and try avoid tending to them. However, you need to take care of yourself in order to take care of others and to keep yourself well. Don't be afraid to take a time out and have a bubble bath, or whatever else you may do that makes you fee good. It might be a lot on you emotionally to support a friend with an illness, and that is understandable. Be sure to acknowledge and tend to your own feelings as well.
As a friend of someone with an illness, you may have your own set of challenges. Do not be afraid to talk about about your own challenges with your friends. Friendship goes both ways, and often times we want to be there to be support you as well. I like being able to support my friends because I like helping others, and feeling as if they can still rely on me. Your challenges may be different than ours, and that is okay too. Life happens differently to everyone.
Thanks for reading, and thank you for all my good friends and family members who support me.
"If you have a loved one who suffers, you can be a compassionate ally for him... Play the role of a bell of mindfulness. Your squeezing the hand is like a bell, lovingly calling your friend to come back to himself. That squeeze means, 'I am here for you. You don't need to do anything but breathe.'"
— Thich Nhat Hanh, No Mud, No Lotus, p. 42.