Tuesday, October 4, 2016

In honor of Invisible Illness Week, Here are some tips for family and friends of someone living with a chronic illness. By K.Harney (CEO LFTC)

1.  Don't limit us but respect our limitations:  Just because somebody is suffering from chronic illness, that does not authorize the people around them to try and "Captain" their lives for them. People with disabilities should be allowed to have the same hopes and dreams as everyone else and given a fair opportunity to achieve. Sure, sometimes those achievements may be more difficult to attain.  There will be some things that they may not be able to do. However, it does not mean it is fair to say they should not try.  Let's face it, all of us, sick or healthy have limitations.   It should be up to us as individuals to figure out what those are. In that same regard, when limitations are revealed they should be respected. If you know someone who is chronically ill and they tell you they cannot do something or be somewhere because of their illness, try to be understanding of that. They know their bodies better than you and if they tell you that something is going to be difficult for them, believe them.  Know that they are not trying to let you down, they are just trying to take care of themselves. They should not be made to feel guilty for that. 

2.  Learn about our disease(s): One of the very best ways to show support is to become educated about the illness. Learning about the symptoms and treatments will show that you care and you want to be there to support.  You will also be surprised how this opens the door to conversation and connection.  One of the best ways to show support to someone fighting a chronic illness is to become informed on exactly what they are fighting.  You will likely be surprised to learn about what they are going through since people with chronic illness rarely share their challenges to the extent that they are suffering.
3.  Focus on being supportive, not trying to fix us: I have 5 autoimmune diseases.  They are not curable.  Yes, there may be treatments or even lifestyle changes that can improve certain illnesses but please don't ever assume that you know how to fix someone with chronic illness.  Just because drinking some nutritional shakes cured your gout, does not mean it will stop my spine from fusing. Just because your nasal polyp disappeared after you prayed to God does not mean God can heal my brain lesions. Do not assume that it must be caused by what I am eating when you don't even know what I eat! (I eat very healthy, organic, avoiding hormones and gmo's, etc by the way). Being sick is not our fault.  It is not a punishment. Avoid comments that start with, " You should". Stay away from comments that come from a place of judgment and instead try comments that come from a place of compassion. 
4. Be aware that looks can be deceiving:  Although we may feel like the walking dead, we don't necessarily look that way.  Do not assume we don't struggle because we don't struggle out in the open.  I can do most of what everyone else can do, it is just 10 times harder.  I love the water and doing just about any water activity that I am capable of. I love to snorkel, swim, kayak, and go river rafting.  There are some activities that I just can't do.   I am ok with that.  Keep in mind that just because you see someone with chronic illness partaking in the activities of life, it does not mean they are not truly sick.  Doing the activities I love is vital to keeping me going for many reasons, both physical and mental. However, that does not mean those activities come easy for me.  Quite the opposite actually. I may have to make adjustments and alterations you are unaware of.   I will also pay with extreme fatigue and pain for days after a particularly active day.  When you have a disease(s) that is there to stay, you have to learn how to evolve to get through life. When you see me smiling and laughing, that does not automatically mean I feel fine. I want to share in life's joys just like someone who's healthy. Just because someone is not in a wheelchair or not on crutches does not mean it's easy for them to get around. Just because you see them moving around, it doesn't mean they are not in pain. You may not know that for those social gatherings or busy days at work they may have to take pain pills just so they can function. Perhaps the next day they may be so sick that they will be couch ridden recuperating. When you deal with something every day of your life, you don't bother mentioning it everyday.  You evolve to a new normal but that doesn't mean it does not effect you. 
5.  Remember our reality is different than yours:  Understanding chronic illness is like most things in this world in that if you have not experienced it yourself, it can be very difficult to understand.  For example, somebody who deals with chronic migraines has a much different experience than someone who gets an occasional headache. Someone who has a little trouble sleeping here and there has a much different experience than someone who suffers from true insomnia. Everyone will suffer from pain, fatigue and other ill feeling symptoms during different times in their lives.  That is just part of life. However, the levels of such symptoms can vary immensely from person to person. Do not ever assume the pain that you may have felt is equivalent to what someone else feels. Also, people handle the symptoms in different ways. Just because someone does not complain about their symptoms does not mean their pain is less.

6. Small gestures make big impressions:  There are a lot of online communities for people suffering from chronic illness. By far the number one topic discussed over and over is the feelings of loneliness, judgement and abandonment that people experience from others and how horrible that can feel. When someone is going through a difficult time, that is when they need the people around them the most. Coincidentally, in many situations that is when the people around them flee. There are a lot of theories that go around the chronic illness community about why this is.  I could write a whole page on that. Regardless of the reason, what I would say to people who know someone who has a chronic illness is simply stay connected. A small gesture that may only take you a few minutes of your time, can have a big impact on somebody suffering from chronic illness. This could be something like sending a card, texting a supportive message or funny picture, inviting them over to watch a movie or asking if you could bring a movie and dinner to them.  Keep in mind that when somebody is feeling particularly ill, they may not be up to housecleaning and therefore may not want people over. On the other hand sometimes if you're feeling ill, it is easier to stay at home in your pajamas then having to go to someone else's place. My best advice would be to offer both options and let the person with a chronic illness choose what works best for them without any guilt/pressure added.  Offering to accompany someone suffering from chronic illness to an upcoming appointment is a very thoughtful way to show support. If you know that they're having surgery or some sort of treatment that's going to make it harder for them to get around for a while, offering to bring food or help out in other ways is very kind. If they have young children, an offer to babysit or pick kids up from school may be a good way to show support. 
7.  Check in: One thing you learn pretty early on in the chronic illness fight is that many times people around you don't really want to hear about it.  After all when someone says, "hi, how are you doing", they are probably hoping you will just say, "fine". When someone answers with, " not great.  I have been pretty sick lately", people don't always know how to respond and may even respond with a comment that is taken as insensitive or uncaring. For this reason, people with chronic illness may keep their pain both physically and mentally to themselves adding to the isolation of living with chronic illness.  Taking the time to send a quick text that says, "Thinking of you or how are you feeling this week?", can mean a lot. If you know that somebody has an important medical test or surgery coming up, take a moment to jot down a reminder in your phone so you can check on them that day and see how it went or give them positive wishes beforehand.  Also, remember that most chronic illnesses are not going to just go away so continue to check in overtime, reminding them that you have not forgotten that they may be struggling.

8.  Only offer support that you know you can give:  I have mentioned several ways to show support above.  When offering support try to think of something specific that may be helpful that you know you could and would really do.  Do not make offers that you don't really mean. I think a lot of times people offer "empty support" in an attempt to make themselves feel like they are being supportive.  It is really easy to say, "let me know if you need anything" but ask yourself, what do you really mean by that? Of course everyone is busy with things going on in their own lives and people with chronic illness really do understand that. Remember that even the smallest, simplest gesture can mean a lot though.
9.  Some comments can be hurtful. Be thoughtful in what you say:  Many times comments are not being made to be hurtful but we interpret them that way. The most infamous comment is, " you don't look sick". I think those saying that probably mean it as a compliment actually but many people with chronic illness feel that comment means you don't believe they are sick and it invalidates the agony they go through. Some other comments I have heard include:
1.  Your too young to have that much wrong with you 
2.  Why would you want to put your body through that
3.  You have that, oh yikes that's bad
Those are just a couple examples. There have been many more. 
The one that will forever stand out for me though was," How long do they think your gonna live. Your disease is fatal.  You know that right?"  I was at a dentist apt when the dentist said this to me. I was in shock when he said it. All I wanted to do was tell him off and leave but it was right in the middle of a procedure so I politely explained that my disease was not  necessarily fatal.  The symptoms can be but I planned to be around a very long time. I got through the apt, cried on the way home and of course never went back to that dentist again. 

10. Forgive our bad days: Being in chronic pain, especially with little sleep, would make anyone cranky.  If we seem a little on edge some days please be understanding. I am very lucky that I have someone in my life that truly is there in sickness and in health and in good and bad. For the most part you will find me smiling but there are some days where I have just had enough and that's okay. Also remember that laughter is the best medicine.  There is not a day that goes by that I do not laugh.  My SO and kids make me laugh all the time and it really does keep me going.