My invisible illness isn’t invisible: some people just don’t want to see it.
Six tips for finding people who acknowledge and ease your suffering.
I want to start with this: I see your invisible illness. We haven’t met yet (maybe one day we will!), but it doesn’t matter — whatever you are suffering from, I know it is real. I know it can be painful. And I know there are people who probably doubt you.
I certainly have people who doubt me. They don’t have to say it directly to my face, either. I can feel it. We can all feel it, can’t we — the judging, the distrust, the “she is faking it” thoughts that don’t even have to be spoken. We can recognize that glance, or the awkward silence, that says so much without having to say it.
The phrase “invisible illness” is amazing, because it’s such a picture-perfect way to describe what you and I are going through together: pain that can’t be seen, murky diagnoses, bodies that look healthier than they are.
But I’ve come to realize: invisible illnesses are not invisible.
Some people just choose not to see them.
And those are the people that you cannot depend on to help you with your healing. You have to find people who can see you.
Something incredible happened to me at the lowest point in my lifelong battle with depression and anxiety: Some friends distanced themselves, and some friends came closer. Some stepped back, and some stepped up.
I don’t fault the people who distanced themselves. Maybe they had too much going on in their own lives to be prepared to help me. Maybe they didn’t know how to help, and it was too scary to try. Maybe they don’t understand mental illness — and how could they, if they have never experienced it themselves? Maybe (probably) at least a few of them don’t believe in mental illness, and think it’s just a lack of character or drive or determination.
I’ve learned not to be upset with these people. I still love and cherish them, and I think you should, too. It’s helpful (and freeing) to choose to see the good in people, despite their flaws.
But don’t expect these people to come to your aid, or to be your support network. If they cannot see your invisible illness, they cannot fully see you — and right now, you deserve people who see you.
My top tips for finding people who truly see you, and can be there to support you, are:
Tip 1: Find others who have suffered or are suffering with an invisible illness of their own.
This seems counterintuitive, since you might think that other people battling their own illnesses wouldn’t have the energy to rise to the occasion. I’ve found the exact opposite to be true. It’s soothing, helping other people. So the friends I’ve made through my vulnerability — others that are living with things like chronic depression, fibromyalgia, Lyme Disease, and Borderline Personality Disorder — are actually now my strongest advocates. Somehow, it just works out: when I am low and need someone, they are able to rise to the occasion. And vice versa.
The more I think about it, the more it makes sense. We find strength in numbers, and we share common experiences. We’re a tribe, those of us with invisible illnesses. Seek out your tribe, if you haven’t already: I promise you will not regret it.
Tip 2: Find the right healthcare providers.
Just because someone is a doctor, or a psychiatrist, or a licensed therapist doesn’t mean they truly see you. Doctors (like any professionals) are only as good as how current (or even specialized) their knowledge is — and some don’t invest as much as others in continuing education. Some are so old-school they just don’t acknowledge illnesses that can’t be diagnosed with a lab test.
Even if they are the only doctor in your town, or they are the physician your family has seen for three decades or more, go find more modern, compassionate help.
I know insurance and money are often boundaries here. I have many of the same boundaries as you. Do whatever you can — even if it’s saving for a few months or even starting a GoFundMe to consult with the right doctors who specialize in your needs.
Some invisible illnesses may never be properly diagnosed. That doesn’t mean you aren’t ill, or don’t feel that way. You deserve empathy and understanding from your medical team, not suspicion and dismissiveness. My therapist sees my traumas, my challenges, and even my strengths, and she gives me validation and encouragement.
Tip 3: Take a break from toxic people
If someone in your life is particularly hurtful about your suffering — or they simply can’t understand what you are going through and keep encouraging you to just “suck it up” or “get on with it” — it may be time to take a break from that person.
This is perfectly okay. You have permission to surround yourself with people who help lift you up, not bring you down. In fact, you deserve and need that.
This tip isn’t always easy, but it’s essential. Taking a break doesn’t have to mean cutting them out of your life altogether, although it certainly can mean that if someone is extremely toxic to your wellbeing.
When you aren’t feeling well, after all, why make the conscious choice to feel worse?
Tip 4: Be vulnerable.
I can’t say this one enough. I think I write it in every article. The connections I have made by being honest and vulnerable about who I truly am and what I struggle with are the deepest connections I have made in my life. These are the people who show up when I need them most.
Some are with people I met right here on Medium, through my writing. Check out my article, “My Mental Illness DOES define me.” I talk more about this — and even about how (and why) I tell my clients very directly about my mental health journey.
Vulnerability has been my biggest key to deepening existing friendships, making new ones, getting better care from others, and providing better care to myself.
Tip 5: Show other people that you see them
One of my challenges is that, at times, my illness consumes me. Maybe you feel this too. There are days or weeks or months where I feel like I take a lot from others, but don’t give a lot back.
So I’m becoming more conscious of this. When I meet with friends, I start by listening to them. I ask how they are doing, and focus the first half of the conversation on them. Some days, if I am feeling good enough, I don’t even bring up how I am feeling: I just focus my attention on the other person, and make them feel seen.
Often, when you see others, they can better see you. It took me a long time to learn this, and I’m still learning and practicing it. Ask for what you need, when you need it, and don’t be afraid to talk about yourself — but leave room for others whenever you can. The space you make, and the empathy you fill it with, create incredibly valuable opportunities for connection.
Tip 6: Make sure you see yourself.
It’s easy to be hard on yourself when you feel, at times, less than others. Facebook and Instagram make it look like other people are living perfect lives, while you are suffering from a painful, difficult illness nobody else can see.
Naturally, we feel sorry for ourselves, or mourn the loss of our lives before we became ill. Mourning is natural and is a healthy part of healing.
But remember to regularly reflect on who you really are. Your illness is a part of you, but it is not all of you, even on the days when it feels like it is.
To make sure you are fully seeing yourself, you need to:
- See your illness and treat it with compassion. This means taking good care of yourself, recognizing what you need and providing it. Focus on getting the right sleep, the right amount of activity, and the right nourishment.
- See beyond your illness. What do you love to do? What did you love to do as a kid? Remember to live your life despite your challenges.
- Stop being afraid to be yourself. You might not struggle with this, but I did. I was so afraid of what other people thought of my illness, and in turn of me, that I stopped being the eccentric, jovial, slightly offbeat person that I have always been. I tried to be someone else: a tougher, more restrained version of me that ate away at my soul and my heartstrings. In the end, I just got sicker. Healing requires inner peace, and inner peace requires authenticity.
I’m just at the beginning of this journey myself. I have a couple decades under my belt of unsuccessfully managing my illness and just eeking by, and just a few years of putting in the hard work to live the life I actually want to.
I can say this: it’s working. I love my life now. I’m still bipolar, still anxious, and at times, still depressed. But I want to carry on and see where this journey takes me. That’s a huge shift from where I was just a year ago — and I owe so much of it to finding people who believe in me, believe my ailments, and make me feel seen.
I hope these tips are a help in your life, too. Feel free to ask me questions or leave your own tips in the comments — I’m here, seeing, listening, and learning from you.
