One of the surprising elements to come out of my recent Lupus flare is people's response to my health. Friends and acquaintances have shared their thoughts and, interestingly enough, their expectations on how my flare would play out. Many people shared that they have been surprised at how long I have been sick (some even casting suspicion on if that is even possible). I've had a few friends genuinely share that they thought I would be feeling better and back to my old self within a few weeks, a month at the most. Others have expressed frustration in how long and frequently I was ill. Still others were sympathetic but had no idea how to help or what was needed. It has been touching to see a friend's genuine love and care in a crisis.
While each chronic illness has it's own unique conditions and I can only speak based on my experience, I thought I would put together a list of how to respond to a chronically ill friend.
**Disclaimer: Please do not hear me say that a flare or chronic illness is an excuse for poor behavior, complaining, whining, or the platform to garner attention and sympathy. It shouldn't be used as an excuse for any of those behaviors. I hope this list provides some helpful insight into interacting with a person with a chronic illness.
So, here we go!
1) Pray. Pray for your friend. God hears 'em and can work out the health issue according to His will. Never underestimate the power of prayer.
2) Extend flexibility. Even if you don't understand how a specific chronic illness works, be flexible in what your friend or family member can do. Believe me, those experiencing a chronic illness do not want to 'flake' at the last minute on a planned event or commitment. Nor do they want to 'check out' of their normal activities. They don't want to miss out on the fun yet there are seasons when the illness and health takes priority. In my case, a Lupus flare is the time when the disease is in hyper-drive, causing internal (sometimes permanent) damage. If I don't slow down and yield to the disease, I can exasperate it, making the damage done worse. Often, a chronic illness requires day by day living as how I feel today doesn't predict how I'll feel tomorrow.
3) Offer encouragement. Battling a chronic illness is exhausting,frustrating and typically sends one into depression. The chronically ill person has to hand over reins to their life, at times, to the disease, and that is no fun. Be an encourager. Let the person know sunny days are just around the corner and the dark clouds will dissipate with proper rest and care.
4) Ask questions. I, for one, am open about my disease. It is not my identity, it is not something I want to focus on, especially when I'm feeling well but I am happy to answer questions. If you're unsure, please ask. I have been so surprised by how many assumed my flare would last as though it were just a common cold. The truth is flares are unpredictable and devastating. According to www.webmd.com, "Flares and remissions can occur abruptly, unexpectedly, and without clear cause. There is no way to predict when a flare will happen, how bad it will be, or how long it will last. When you have a lupus flare, you may have new symptoms in addition to those you have had in the past." I was surprised to experience frustration from someone who assumed I would be all better in a couple of weeks. Ask questions to prevent wrong assumptions and misunderstandings.
5) Lend a helping hand. Chronically ill patients have one thing in common - severe fatigue. Regardless of the disease, extreme fatigue is the common link. The body is extending all of its energy to fighting off the illness, leaving the body depleted of energy unable to do what we'd consider 'normal' acts. At one point over the summer I couldn't walk from the kitchen to the living room without being out of breath and needing to lay down. I'll be honest here - this bugs me and tweaks anger in me. I know it's silly but it's embarrassing that I couldn't walk across the room without having to sit down. I don't want to feel incapable or weak. I don't want to be seen as that way either (yeah, I know... pride issues). I want to do normal stuff. Cook dinner for my family. Walk to the park and play with my kids. Take a bike ride. Do laundry (don't WANT to do it but need to). Clean my house. Go on a walk. Try new adventures without having to consider pain level and how and when my joints will lock and stop working. Yet, when I'm in a flare, it is difficult to do these things. It is difficult to get out of bed. Literally. Putting aside the severe, heavy, debilitating fatigue that presses on the body like a boulder, most mornings my joints didn't get the memo that I want to move. Walking is something people take for granted. This combo - fatigue, pain and pride - make it difficult to ask for help. Go ahead and offer it. It is truly appreciated in a great time of need.
6) (Ok, this is going to get blunt here but..) Don't dismiss the knowledge. Yeah, I had to go here. I know people mean well but don't dismiss or second guess the one who suffers with a chronic illness. I know the intentions are good and, embarrassingly enough, I've done it too. But consider this... the person living with the illness is not only living it first hand but has most likely done a lot of reading on the subject (not to mention had lots and lots of doctor appointments). For me, Lupus (and the other auto-immune diseases I have because of it) is what it is. It looks different for different people. I know your aunt's cousin's niece only had one flare her entire life and to that I say your aunt's cousin's niece is lucky... and may not have Lupus (key word - MAY). While you may know someone with similar disease or circumstance doesn't make it so for all. To imply that only makes the person feel worse as though they are freaks.. or worse, hypochondriacs. What I know about Lupus comes from what I've experienced with Lupus. Everyone has different rates at which the disease presents itself and to what extent. The most consistent thing about Lupus (and all chronic illnesses, I imagine) is that it is entirely inconsistent. Allow the person to express their unique experience with the illness without dismissing it.
7) Respect boundaries. Understand that your friend or family member, if they know what's good for their health, will need to put boundaries in place. Perhaps it is avoiding certain foods or cutting back on activities once enjoyed by you both. You may not see as much of your friend during seasons when the illness is active. Please don't take this personally. It is not a reflection of the value of friendship or activity. It is, simply, a necessary step to take to regain optimum health. Sure, you may be able to eat what you want without consequence, require only 5 hours of sleep each night, and be active with groups and activities every night of the week but understand these things may not be possible for one with a chronic illness. Also, in order for health to continue to improve and avoid going back in a flare, boundaries most likely need to stay in place to maintain good health after the crisis has gone away. As of right now, I'm not completely out of my flare. Don't get me wrong, I feel immensely better BUT I am still battling fevers, fatigue and pain. I'm not totally out of the woods yet and the boundaries I've created in my life (and even went lax on the past few weeks) need to stay in place to regain my health. Unfortunately, that means I may not be able to volunteer in the same groups, activities or participate in all opportunities that come my way.
8) Recognize that your friend is still your same, 'ol friend deep down inside. Know that your friend is still your friend and diminished health doesn't change that. For me, I had little social interaction this summer, as a way to get more rest and turn my health around. It was a necessary step in order to regain my health and prevent permanent organ damage. When in a flare, anything and everything makes a flare worse. Know that your friendship is strong enough to weather a temporary health setback. Love each other and embrace each other..regardless of circumstances.
Let's face it. It's hard and even awkward to be around a chronically ill person. It's hard to relate or understand, especially if you've been blessed with good health. Trust me when I say that I wish I didn't have this. I hate the inconsistency it brings in my life.. not to mention the pain and diminished health. Some seasons of my life, I'm full of energy and ready to conquer the world and in others, I'm lucky to make it down the stairs. I hope that as my friend, you can rejoice with me in times of good health in my life and mourn with me in times of poor health.. as I hope to extend to you. Journeying down the road of chronic illness with supportive friends makes such a difference!