Be True To Yourself: Even If It Hurts
You’re walking down the street and you run into someone you know. They stop to talk and the first question they ask is: “How are you?”
When you have a chronic illness this is a loaded question, and it’s loaded for T-Rex! Your friend or acquaintance is not ready for the blast that is your answer.
“My back has been killing me for a month, I have 4 doctor's appointments this week, I’m trying a new medication but it gives me headaches, and my relationship with my spouse is strained because of my illness...”
No, we don’t say that. We don’t even mention we aren’t doing that great. We say the same thing every time.
We know nobody is prepared for the truth. Nor do they really want to hear all that is really going on. They expect “I’m fine” and to move on down the street.
“I’m fine” is our way of protecting them and ourselves.
The truth hurts!
But, why? Why do we feel the need to protect them?
I want to share my reasons, and afterward, I want to hear yours.
See if any of these apply to you.
Not passing along pain
I believe if we were honest with the people in our lives, it would kill them. They aren’t ready for this level of pain. This especially applies to family members and others who care a little more deeply.
They want us to be well, and they hate that we hurt. Some of them wish they could do more to help us, and the fact they can’t hurts.
I’m not honest with my parents about my health. They have their own medical issues and they don’t need to be worrying about me as well. Saying “I’m fine” is my way of helping them keep things off their plate.
It is not our friends' and family’s fault that we are in pain. Why make them feel like it is?
I just don’t have the energy…
From my experience, most people I’m honest with don’t want any follow up information. They hear I hurt and they say “Hope you feel better” and move on.
However, from time to time, someone wants to know more and after that, they have follow-up questions. And, I don’t have the strength to give all the answers.
Me: Ankylosing spondylitis is a form of arthritis.
Them: Is it like rheumatoid arthritis?
Me: Kinda, but a little different.
And on the questions go, until you feel like you should be paid for the med school level explanation you are giving.
And, you might not have all the answers, or the ability to stand there as long as they are wanting you too.
I am all for spreading the word about AS, but sometimes “I’m fine” is all I can muster.
Not wanting to be minimized
AS is a very serious condition. So, when someone takes your symptoms and tries to treat them like something they are not, it can be quite helpful.
“Have you tried a vegan diet?”
“Ice and rest do wonders for me.”
“Have you tried [insert herbal remedy here]?”
“Well, we are all getting older!”
That last one always makes me red. On a side note, I once had a doctor say, “We are all getting older. You’re just getting older a little faster than most.”
That’s still my favorite comment. At least he gets it.
But, with those lines, all they are trying to do is minimize and simplify our condition. They might want to legitimately help us, however, they aren’t willing to put in the effort.
Vegan diets and herbal remedies might have helped them or someone they knew with their energy level or sleep. Maybe it even helped with their pain. But, as of right now, ankylosing spondylitis does not have a cure, and that is what they are looking for. A one step, and done solution.
Believe me, if AS could be cured with vegetables, I think we might have heard about it.
Quite Frankly, I Just Don't Trust You
There are people in our lives who we just don’t trust with our condition.
Oftentimes, it is a boss, supervisor, or the nosy co-worker in the break room. The people who can't handle our reality or might use it for nefarious purposes.
Now that I have accommodations under the ADA, I am out about my condition with my supervisions, however, that still doesn’t mean I’m going to give them every bit of information about how my day is going.
And the nosy co-worker, yeah, right! I really don’t care who knows about my AS, but I also don’t want to be the subject of gossip. Those are two different things.
Try to be yourself
Now that I have laid out the most popular reasons for telling people you are fine, when you are most certainly not, I’m going to turn the tables just a little.
While you are in your full right to share whatever you want, I encourage you to be true to yourself.
Your AS life is your life and you shouldn’t censor yourself for the benefit of others.
If you give someone the full story about all your pain, appointments, struggles, and relationship stress, and they can’t handle it...Do you know whose problem that is?
Let them be the ones to feel uncomfortable for a change.
You are an important person, and you deserve people’s attention. The fact that someone might not have the best reaction doesn’t mean you shouldn’t share.
It actually means you should share more!
You are at the forefront of the AS informational movement!
Some day, when ankylosing spondylitis is a household name, you will be part of the reason that happened.
Do you use the word disability to describe your AS?