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For the Warriors Fighting an Invisible Illness, and Their Loved Ones Offering Support

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I was diagnosed at age 14 with an autoimmune disease named Takayasu’s arteritis (and much later with seronegative rheumatoid arthritis). The years before I was diagnosed (and before the onset of any symptoms), I was a competitive swimmer. I had been swimming year-round since the age of 8 and loved the longer, more grueling events, like the 200 meters fly or 400 meters individual medley. While I certainly wasn’t an “up ‘n coming superstar,” I was fast enough to start thinking about a scholarship to a drill instructor school. Or, at least, this was the path my coaches and I thought we were walking.

That path started to blur when I struggled to finish one lap down the pool, let alone an entire 400 meter individual medley. All of sudden, my energy levels plummeted, my hands went numb and blue during practices, and I sat out sets shivering on the bench. My coach (as awesome as he was) thought I was lacking motivation. That I wasn’t trying hard enough and I needed to get tougher or push through. At the time, I was frustrated…thinking maybe he was right. That I’d lost “my edge.” But now, looking back, I can’t blame him. When you have an “invisible illness” your symptoms aren’t tangible. They aren’t easily understood. Heck, I didn’t even know what was going on…other than knowing all of a sudden I could hardly bring myself to do anything.

Getting diagnosed with Takayasu’s arteritis (TA) gave “formality” and answers to my in-the-pool struggles, though internally I didn’t feel much better. Sure, I could still talk about who I used to be in the pool – and how an illness changed all that. I could share my previous times and personal bests. But honestly? No one cared anymore. There was nothing visible to see when it came to the difference in how I could move. The arteries that were “officially” narrowed? Only the MRI can see that. The fatigue that creeps up my left arm when I’ve used it too much? Only I can feel that – and I never know when it’ll start. Invisible illness is named so for a reason. Our symptoms aren’t the only pain we feel. The misunderstanding – the ignorant expectations – can hurt just as much.

I share this today because I know that when a loved one is struggling it can be hard to say the right thing or know how to act. That, sometimes, our desire to not make matters worse will leave us not saying anything at all. We avoid conversations, bring unnecessary humor into awkward lulls, or even minimize a struggle in order to end a discussion as quickly as possible. But I also know that those struggling with invisible illness, such as an autoimmune disease, chronic pain, or mental illness, want to be seen, heard, and cared for just like anyone else.

So, this is a post to bridge the gap.

It’s for both warriors fighting an invisible illness – and their loved ones trying to offer support along the way. I’m going to share five types of comments those with invisible illness would rather not hear – and what a loved one offering care might want to say instead. Plus, I’ll provide a response for warriors with the things that we can say to steer conversations in a more nourishing way.

In case you haven’t heard the term before, invisible illness is just that…invisible. Those struggling with autoimmune diseases, chronic pain, or mental illnesses like depression tend to look healthy and “normal” on the outside while feeling varying degrees of physical and emotional pain on the inside. This is part of what makes it challenging to know what to say and how to react. The “invisibility” of the pain is why we are sometimes left grappling for any phrase we’ve heard in the past – without putting a ton of thought into that phrase and how it might make a loved one feel.

“God never gives anyone anything they can’t handle.”

“If you need anything just let me know.”

“Have you tried to [insert solution here]?”

“You know they say mind over matter…just think positively!”

“Oh, you’re going to be fine.”

“At least you don’t have X!”

While these phrases are most often well-meaning and an offer of support, the problem lies in their emptiness – and the fact that, intended or not, these comments often shut down conversations before they even get started. Again, this is a post to help change the conversation, both for those with invisible illness and for their loved ones. It’s one post to share, pass along, and point to when opening up space for more intentional, compassionate dialogue.

While researching for this post, I reached out to a few fellow warriors and asked two simple questions: What are you tired of hearing? What do you wish people knew, said, or did instead? Here’s what we came up with.

What not to say to someone with an invisible illness (and what to say instead):

1. An Implication of Blame

“You aren’t trying hard enough.”

“You’re just lazy.”

“If only you didn’t do X.”

Here’s the thing: Many of us know what’s going on with our bodies and when something really is off. We might not be able to put our finger on it exactly and we might not yet have a formal name for what we feel, but we still want to be taken seriously. We still want answers and understanding. We want someone to walk the unknown path with us without implying that we’re at fault for being here.

If a loved one is coming to you in pain, then they’ve most likely already tried to “motivate” or “push” themselves into feeling better. And doing that – pushing and forcing – gets really exhausting day after day.

“Push yourself to get out of bed and wake up.”

“Push yourself to keep your eyes open and get this work done.”

“Push yourself to get to the gym.”

“Push yourself to keep and make plans with friends.”

Sometimes, we end up pushing ourselves from 5:00 a.m. until our heads hit the pillow at night. While we might be used to pushing ourselves, we often wish we were pushing more for our goals (like big dreams and fun activities) rather than to simply make it through the day. So, instead of assuming we haven’t put any effort into feeling better, or instead of focusing on that one thing we might not be doing, recognize what we are accomplishing.

What loved ones can say instead: “I see you working so hard, and I’m so sorry you are having to overcome this.” Or, “I hear what you are saying and I’m here to help you figure this out.”

How warriors can respond to the implication of blame: “I’m doing the best I can with what I have. Maybe this blog post (or book) can help explain it. This is what I experience on a daily and weekly basis.” ​

2. Unsolicited Advice

“You just need to (stop eating ___, exercise more, insert the latest health fad?”

I’m writing this post from the belief that someone with an invisible illness is sharing from a place of connection, intimacy, and a need for support…and that the one responding is coming from a place of wanting to help. In other words, I believe people are genuine. That we’re all doing the best we can with what we have. And I know that when I don’t know what to say, I blurt out whatever I can and whatever I’ve heard before. I try to solve a problem, help avoid pain, or ignore a struggle as to hope that same struggle can’t possibly happen to me one day, too.

Unsolicited advice is one of the ways in which we try to solve a problem, even if there isn’t an actual problem to solve. While telling someone to cut out certain foods, eat a specific diet, or try a miracle product is most often coming from a place of love…it usually hurts our feelings and sounds a bit more like judgment instead.

Because people with autoimmunity or mental illness, for example, are trying to do anything and everything to feel better. Plus, we’re working with doctors and medical professionals already. In other words, we are doing the absolute best we can with what we have. Unsolicited advice often brings with it exhaustion and shame – two things we’re already feeling.

What loved ones can say instead: “Thank you so much for sharing. I can’t imagine having to navigate X (a particular struggle). I know you don’t know what’s going to happen, but know that you’re not alone. We’re in this together. I’m going to pick up dinner tonight, OK? We can have a girls’ night, watch movies, and relax?”

How warriors can respond to unsolicited advice: “You know, I’m working with an awesome team of doctors and finding what works for me. For example, making sure I carve out time for….” Assume that your loved one is trying to help and let them know what actually works for you!

Note: This is, of course, very different than when a loved on asks for advice! If someone is reaching out to ask:

“Have you tried…”

“Do you know of any resources for…”

“What would you suggest?”

…Then certainly share away!

3. The But Rebuttal

“But, you don’t look sick?”

“But, you always seem so bubbly and happy!”

“But, you eat so healthy…how could you be sick?”

“But you do so much, you can’t really be in that much pain?”

The “but rebuttal” often comes from a curious place. And, many times, it’s even intended as a compliment. “Sick? But you look great!” Unfortunately, the miscommunication here is in part because this “compliment” hits on one of our biggest insecurities: That nobody believes us. (The is true for the next numbered comment, too.)

Hitting on this insecurity is especially triggering when someone is going through the process of first getting diagnosed. It can take years to be diagnosed with an invisible illness, which can mean months and months of doctors not even believing us. We know that understanding an illness that cannot be seen is not easy. It’s hard to imagine that a friend or a loved one is struggling with something that lurks underneath the surface – or underneath well-positioned clothing.

After all, some of us carry on relatively normal in society. But, on those particularly bad days? The ones where psoriasis flares, joints ache, or we can’t get out of bed? On those days, we can’t hide the invisible illness any longer. So, when we cancel plans, or call in sick to work, or simply ask to reschedule a meeting, we hope to be met with compassion, not a comment that calls into question if we’re really sick or not.

What loved ones can say instead: “What did you say you’re experiencing? Can you explain it to me? How does it make you feel?” (Not in a therapist-sitting-on-the-couch kind of way, but in a curious, what-do-you-experience-that-I-can’t-see kind of way.)

How warriors respond to the but rebuttal: “I’m glad I look great, but I don’t feel well. I guess I’ve gotten pretty good at trucking along. You see, here’s what I experience on a daily basis…”

4. The Quick Disregard or Minimization.

“It’s all in your head…”

“Mind over matter…”

“Just be happy!”

“Snap out of it.”

The quick disregard or minimization feels as though we’re being waved off, labeled too sensitive (in a negative way), or simply not important enough to take seriously. And that’s painful. Especially when we’re in the middle of trying to find a diagnosis and feeling more frustrated than ever at the last six months we’ve spent being poked and prodded to no avail.

When the people you love and respect tell you that what you feel is “all in your head” or “a matter of mind over circumstance,” then you start to doubt yourself. Not in a “maybe I do need to walk the edge of my comfort zone” kind of way, but rather in a “what’s wrong with me that I’d need to make this up” kind of way. We don’t solely think “Can I push myself harder? Am I making an excuse?” We think “Why am I like this? Why am I so lazy? Do I not have any willpower?”

Yes, positive thinking is awesome. I really do believe that our bodies feel best when we believe that what we’re doing will help. But, we’re not all able to hear that in every season we face. Some of us haven’t yet found a diagnosis, or an answer, or anything at all that relieves even a second of our pain. (And we’ve definitely tried to “just feel better.”) So, when we open up to share the emotional and physical symptoms we’re experiencing, give us time. Put down your phone. Make eye contact. Imagine a problem of yours – maybe something that’s been taking over your thoughts for the past days, weeks, months, and even years – ​and how it would feel to have someone truly care. Not to solve your problem, but to notice and acknowledge it.

What loved ones can say instead: “I know you don’t know what’s going on, and doctors might not know either, but I’m ready to help you figure this out. And to find someone who understands what you’re feeling. We’re in this together.”

How warriors can respond to quick disregard or minimization: “You’re right, positive thinking is pretty cool. But, I also experience physical and emotional symptoms. I know you can’t see them, so here’s what a typical day is like for me.”

5. The Empty Condolence

“God only gives what you can handle.”

“You’re so strong! You’ll be fine!”

I’m not here to ruffle any feathers. I even have a frame of 1 Corinthians 10:13 in my office. It’s great to be reminded that we can handle anything thrown our way. But sometimes? Sometimes, we just don’t want to…right?

I’m talking here about the lines that are thrown around when we don’t know what else to say. We all do this in all kinds of situations, and I know I’ve uttered this more than once myself when talking to friends and family members in all kinds of grief-stricken situations. We mean well, we’re trying to offer solace, to bring faith into the equation, to give hope, and to encourage someone to keep putting one foot in front of the other.

And all of that?

That’s really really good. That is what we need, just not in this way.

Instead of reminding us that we can “handle” some illness (which some of us already know and others aren’t ready to hear), offer a more concrete condolence or olive branch. Maybe send us a sermon that includes a story about whatever we’re struggling with. (Sharing our story and hearing the story of another reminds us that we’re not alone. This by itself can be some of the most powerful medicine on rarth.) Bring us a cup of coffee and simply sit. Pray with us. Pray over us. Hug us tightly. Send us a link to learn more about a community, one that understands our challenge or struggle.

What loved ones can say instead: “I’m here for you. We’ve got this. I’m running to the grocery store later, can I pick up anything for you? Actually, just give me your list.”

How warriors can respond to the empty condolence: “You know how sometimes you just don’t want to be strong? When life feels too big? I’m sure you’ve had a moment like that. Well, that’s where I am right now. I don’t want to think about getting through it – I just want to feel for a minute. Feel sad. Feel angry. Feel confused. Will you sit with me while I do?” (Or drive me to an appointment, or call to check in tomorrow morning, etc.)

How to start the conversation if you’re the one with the invisible illness:

What if these phrases aren’t personal?

What if our loved ones simply don’t know what to say?

What if they’re doing the best they can?

What if comedy (or minimization) is how some people cope with uncomfortable situations?

I know that imagining your loved ones are being supportive is completely different than actually feeling supported. And I think we need (and deserve) to have honest conversations with loved ones and express how these comments might leave us feeling. It’s important for our loved ones to take responsibility for their words, too.

However, we might be able to change the conversation by assuming the best in everyone, and remembering that ultimately we have the final say in how a comment leaves us feeling. At the same time, if we keep getting shut down or turned away from doctors, providers, or even loved ones, it is OK to continue the search for answers and support elsewhere, and to arm yourself with the knowledge needed.

Do you struggle with invisible illness? If so, please share this post with family and friends to help spread the message and create more intentional and compassionate conversations around illness.

Getty Image by wildpixel

Follow this journey on The Wellness Boulevard.

Originally published: May 17, 2018
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