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To the patient feeling guilt,

Guilt is something that I have tried hard to scale down since my chronic pain started – and I think many of us are haunted by this. Guilt about causing our family and friends to worry. Guilt about canceling because of a bad day. Guilt about spending ”too” much time in bed instead of doing a thousand important things. Guilt about doing something fun even though we knew it would increase the pain. Guilt about choosing the wrong doctor or treatment. Guilt about not coping well enough all the time. It goes on like that.

So many times, I have heard that you should not let the pain control your life or keep you from doing anything. Honestly, I disagree. If you have a severe chronic condition, I think the pain can control you no matter what. It is there to remind you of it every day — and it does not help to ignore it instead of accepting the new terms. That is just pushing an exhausted body and mind too far, day after day. Maybe one of the guilt triggers is the idea of the perfect patient who lives life just as before.

For me, the difference is to enjoy the ride as much as possible in spite of the limitations that come with the condition. Sometimes that means spending my energy on friends, cooking or taking a whole day in bed. It also means that it is OK to give up once in a while, when the pain is consuming — or when you feel hopeless and view the whole world as unfair. As long as it does not result in isolating yourself. Of course, nothing good comes from getting stuck in dwelling and self-pity.

My point is this. Rather than blaming ourselves for what we did not get around to, maybe we should be proud of ourselves. Because it is a challenge to live with this. And every time we do the smallest thing despite the pain, it means that we are still trying.

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Pain flares tend to send me into fairly predictable downward spirals when it comes to my thinking. My mind begins to race, anxiety sets in, and my thoughts go in unhelpful directions, as I consider how the additional pain is going to affect my schedule over the next week.

Often, behind my anxiety and thoughts, I find a lot of questions. Questions such as…

“Will I make it through X responsibility tomorrow?”

“How bad is the pain going to be this weekend when I have to do Y?”

“How many days will the pain get progressively worse before it plateaus or feels better?”

“Is this flare going to be like the epic one I had last year?”

Typically, these questions head in two different directions.

First, I think about past flares and try to get a sense of how this current flare will compare. This thought process can become quite frightening because some of my past flares have been terrible and left me glued to the couch for months at a time. I start to dwell on how I felt in the past,
and this only exacerbates my unhelpful thinking in the present.

Secondly, I start to think forward, anticipating what the pain will be like and how it will affect me over the next days, weeks, and months. This can be frightening as well, because there are things in my life that absolutely have to get done. They absolutely need to get done, but unfortunately, chronic pain does not care about my needs, plans, or absolutes.

My most recent flare was triggered the Thursday before Christmas. I was doing my regular physical therapy exercises, and my body decided it was too much. That night I crawled into bed, and as the hours went by, the pain only intensified. My mind started to drift backwards and forwards as it typically does.

I don’t know what prompted this shift in my thoughts, but as I was lying in bed, I decided that to get out of this unhelpful thinking rut, I needed to change the questions I was asking myself.

I started to ask myself, “Can I get through the pain that is happening right now, in this moment?”

I realized that I could easily answer “yes” to this question. I knew I was going to make it through the night. My mind began to calm down. I was able to set aside whether or not I would be able to get through the my responsibilities tomorrow and focus on whether I could get through the pain right then.

Then, I asked myself, “What will make it easier for me to get through the pain in this moment?”

For me, the answer to this question that night was to do some deep breathing, meditate on Scripture that was encouraging to me, talk to God about what was happening, and get out of bed to get a new ice pack.

As I reminded myself to do these things I started to feel more in control. There was literally nothing I could do about my responsibilities for the next day, and I needed to let go of that. But there were things I could do in the moment that would decrease my pain and give me strength to move through the pain.

Most of us know that becoming more mindful of the present is important when it comes to managing chronic pain. But making that switch can be difficult. Something about changing the questions I ask myself has made that switch much easier for me over the past few weeks.

What questions do you ask yourself during a pain flare? Are there better questions you should be asking yourself?

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The other day, I went to see my pain management doctor for trigger point injections. I got about six of them, and after they were done, my doctor said I did amazing for someone who had never received them before. He remarked on how I didn’t even flinch — not once. I kind of chuckled and said I had a high tolerance for pain. He responded that perhaps I was a bit “clandestine” about my pain.

I had to look up clandestine. It generally means secretive, especially with illicit activities. Well, my pain is not illicit, and I think he really meant that I’m just secretive about how much pain I am in. 

I’m the kind of person who has random bruises, but has no idea how they got there. I’m the kind of person who subluxated my patellas, thumbs and toes and just kind of went on. I’m the kind of person who doesn’t realize she has a second-degree burn because it “just hurt a little.” 

Pain is white noise in my life. It’s in the background — always present. So present, in fact, that I often don’t realize when I’ve injured something or am seriously ill. I attribute things to my “normal” when in fact they can be much more serious.

When I had pneumonia last year and almost died, I thought I was just a little bit sick and had the flu or something. It wasn’t until my oxygen levels were in the 80’s and I couldn’t breathe that I went to the doctor. Until then, I had been using breathing treatments and was just going about life as usual. 

And I almost died. 

When you are chronically ill, when you’re always in pain and you don’t always have the best mind-body connection. It is just that — white noise. It is always there, so you learn to tune it out. I often remark that I’m at a 3 or 4 on the pain scale, but upon looking at various pain scales and what the numbers actually correlate to, I realize I live my life somewhere in the 7 to 9 range on a daily basis. 

When I go to the hospital, I never tell them my pain is a 10. A 10 to me is dying. But in reality, I’m often at a 10. My pain gets so high that it starts disrupting my breathing and sends my heart rate soaring as my body tries to regulate my pain.

Most of the time, I just keep pushing through. Most days I’m in bed, but I know that moving helps. I was doing a lot of stretching, but then I found out I have Ehlers-Danlos syndrome and suddenly I’m not allowed to stretch like that anymore.

I’ve found various ways to help with the pain — topical creams, elevating my legs, alternating ice and heat and essential oils. I also take some pain medication, but I’ve gotten so used to being in pain that it just sits there in the background, occupying my body but at a disconnect with my mind.

I go through the motions of my day, nursing my sore body along, but I’m always willing to push myself when I have rare moments of fun. I live each day with a constant headache, which can morph into a serious migraine at any time.

I’ve developed a good mask. It protects me pretty well and doesn’t let on how bad my pain is. I’ve learned that when I want to go out that I need to put some extra effort into my mask and make it a little stronger in order to make it through the outing. 

The pain is here, and it’s here to stay. 

I take solace in the fact that the static of it is always there — sometimes on mute, sometimes on surround sound. It makes me appreciate my good days more because I know how bad a bad day can be. 

Pain will always be a part of my life. In order to deal with it, I have to tune it out. I have to put it on mute. But it’s always there, and sometimes I just can’t turn it off, no matter how hard I try.

Follow this journey on When Mental and Chronic Illness Collide.

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A “friend” recently said to me, “I may have a guy for you.” She knows I’m single and have been looking for someone special for a while now.

We spoke over the phone and she asked, “What do you do? What do you keep busy with? I just want to have things to tell him about you.” I reminded her I have chronic pain due to arthritis and that, unfortunately, I can’t work due to the pain. I also told her that I preferred if she didn’t mention my situation to this guy since that’s something I like to personally relay once I know someone.

When I didn’t hear back from her, I reached out to her via text message and asked whatever happened with that guy. Her response was harsh to say the least: “Oh, yeah. He’s looking for someone who works, so he’s not interested.”

I couldn’t believe what I was reading. Was it the fact that my biggest insecurity was staring at me in black and white? Was it her blatant disregard for my feelings? Was it her insensitivity? In actuality, it was all of the above and so much more.  

Yes, I was disappointed in her response, and I knew I could never write something so hurtful like that to someone. Clearly, she lacked empathy and social grace. But what was so painful was that I was being judged because I didn’t work, not for who I was as a person. It didn’t matter that was I good person and what my morals and values were. No, all that mattered was that I didn’t work.          

What’s so ironic about it is that I feel I work very hard. As a matter of fact, I work a full-time job 365 days a year. It’s a job called managing my chronic pain. It’s merciless, unforgiving and unrewarding. It’s not a job I chose and not something I get paid for.

Frankly, in my opinion, it’s harder than any paying job out there. It’s work that consists of constant anxiety, worry, frustration and pain. It’s a carousel of endless decisions, treatments, medications and doctor’s appointments that you can never get off of no matter how badly you try.

It’s a job that isn’t surrounded by people and social interactions. Instead, it’s rather isolating and lonely. Moreover, it’s the kind of work that is so unimaginably painful and emotionally draining, but it’s not even recognized by others.  

This needs to change. Society needs to understand and recognize just how hard we work. 

Furthermore, being young, single and not being able to work because of chronic pain is a tough pill to swallow. It’s a shame that in our society judges a person’s worth by “what they do,” and that it’s easy to feel lost without the identity of a job.  

However, there’s a population of people who don’t have a choice in the matter. In these cases, it’s not about being educated (I graduated college with a 4.0 GPA) or not being able to find work. It’s about not being able to be in the workforce due to chronic pain.

I believe people shouldn’t judge someone just because they can’t work, especially if they may be doing a much more difficult job like managing their chronic pain. I hope people will open their eyes, mind and hearts and try to look at a whole person instead of just a part of them. 

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Your 20s are supposedly the best years of your life, especially when you’re having fun all the time and your mind and body are at their best and brightest. While this may be true for some, it isn’t the case for everyone. A topic that isn’t normally found among happy hour conversation or office lunch banter is that of chronic pain, especially as a young adult and the depression that can come along with the condition.

Chronic pain is one of those silent illnesses. Much like depression and anxiety, it doesn’t have to have a rhyme or reason — it just is. And if you’re struggling you’ll know that feeling of hopelessness that comes with being in pain and not being able to cure it completely.

If you’re struggling with chronic pain and you’re in your 20s, don’t lose hope. You can still enjoy your life to the fullest. Don’t let these years of your life pass you by because even though you’re struggling, you’ll never be this young again.

1. Change your mindset.

One of the most fool-proof ways to overcome any obstacle in life is to reform your thinking surrounding it. Now, you obviously can’t think the pain away. However, you can change your thought process when dealing with the pain and how it affects your lifestyle. For many, chronic pain becomes debilitating and puts life experiences on hold. By cultivating a positive mindset, you may be able to overcome the struggle of getting out of bed in the morning just by simply being more optimistic. I know this sounds altogether too idealistic, but it really can at least help.

When you feel like lying in bed all day and the pain seem unbearable, just sit up and think to yourself, “How can I make this a better day?” Even if it’s something as simple as doing some yoga poses on your bedroom floor or getting up to make yourself a cup of tea. Taking action to do something that brings you joy will bring you even closer to persevering.

2. Find relief.

Relief is a destination reached through many different routes. Depending on your journey, the end result might look a little bit different for you. However, there is a light at the end of the tunnel. While your physical pain may never go away for good, your life isn’t over and you will find a way to persevere. We’re so lucky that modern medicine has allowed some relief for the physical symptoms of chronic pain. When you’re in your 20s, there are also a lot of other natural remedies available that could help you cope.

Many have found relief through exercise and meditation. And don’t be ashamed if you need medication to get you through — everyone’s journey is different.

Each day will be a different struggle, especially since you’re a young adult and most likely just figuring your life out. The last thing you want to be worrying about is your illness. Finding relief starts with not letting the pain define you and taking the necessary steps towards getting some sort of relief — whatever that means for you.

3. Seek support.

If you’re on The Mighty, chances are that you already know there is a huge community here to help you through. However, seeking support in real life is also so important. With chronic pain, it can sometimes be so frustrating to enlist the help and support of a family member or friend because it’s difficult to explain something that really doesn’t make any sense. And it’s even more difficult to understand if you haven’t gone through it yourself.

Regardless of these struggles, seek help from your loved ones. Even though they might not fully comprehend your pain, their support and encouragement along the way will help you find hope. Having a shoulder to lean on never hurt anyone. And as far as support from those also struggling — the online world offers huge amounts of loving, empathetic friends who are ready to lend an ear or email feed.

When you’re in your 20s, a sense of community is extremely important and can be just the ticket to finding some sort of solace.

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So you’re in your late teens or 20s and have been diagnosed with chronic pain. Now what? I sense some of the overwhelming and intrusive thoughts in your brain. “I can’t even drink, but I have to live in pain,” “How could this happen? I’m only 20” and other variations of these types of questions race in your head. You start calculating how many years you’ll be living in pain. Half your life? Three-fourths? Two-thirds? Anything more than half is likely, and you’re terrified.

You start drowning. Drowning without any hope or possibilities in sight. You sit in waiting rooms for specialists and doctors, most often surrounded by those much older than you. You’re given strange looks. Maybe someone will ask why “someone like you” is in a place like this. You won’t know how to respond. You’ll look down and mumble something about having an appointment.

Navigating a diagnosis of chronic pain is never easy, no matter your age, race or gender. However, since being diagnosed with chronic pain and femoral acetabular impingement (FAI) at a relatively young age, I’ve learned that age can present a number of interesting and unique challenges.

You’ll need to cultivate skills, similar to those that anyone diagnosed with chronic pain needs to develop. You need to learn how to properly research various treatment options that may be suggested, how to effectively deal with insurance company and how to advocate for yourself and what you feel is best with anyone who may be on your treatment team.

If your diagnosis is very recent, do a bit of research on resources for chronic pain on sites such as the American Chronic Pain Association and the US Pain Foundation.

Challenges you’ll need to learn to handle:

1. “Aren’t you a little young to have chronic pain?”

I don’t know why so many of the people I interact with view chronic pain as something that only older people deal with. Chronic pain can affect anyone. Coming up with a concrete strategy to deal with this question, and questions of a similar vein, is vital.

Over the years, I’ve come up with a few answers for various situations — some sassy, some serious, some ridiculous. Here are a few suggestions, but make sure you feel comfortable saying what you end up choosing to keep on hand. It has to work for you.

• Actually, no, I’m not too young to have chronic pain. The stereotype of those with chronic pain being older is harmful to everyone involved.

• Well, I do love being stuck in a lot of waiting rooms, but yes, I am here because I have chronic pain (must be said with a sickening dose of sarcasm).

2. “You don’t look sick/like you’re in pain.”

If I had a dime for every time I’ve been told that I don’t look I’m in pain/sick, I could at the very least buy the latest iPhone every time the new version comes out. Unfortunately, I’m only paid for those statements in emotional pain — not a pleasant payment.

There is no universal look of “sickness” or “pain.” Just because you can’t see it written all over someone’s body doesn’t mean that it isn’t there. Sickness and pain aren’t always externally verifiable. Just like there’s not a universal look for depression or anxiety, there’s no universal look for being sick or in pain.

Just because you can’t see it doesn’t mean it isn’t real.

3. You can exercise and do other things, so you must not really be in pain.

Just because someone can still exercise doesn’t mean they don’t live with chronic pain. People living with chronic pain can manage their symptoms and do an extraordinary amount considering that diagnosis. Living with chronic pain isn’t the same as giving in to chronic pain.

Here are a few of my suggestions for when someone questions your pain because of an activity you choose to partake in:

• I still have good days where the pain is manageable. My body isn’t useless because of a single diagnosis.

• My body is extremely capable even with a chronic pain diagnosis.

• Exercising actually helps my chronic pain because it helps with blood flow and circulation. I have to be careful, but I can still participate in the activities I love.

Other things to remember: 

1. You’re young and you have chronic pain

Do not let anyone invalidate your experience because both are true, and you’re living in your body, not them.

2. Chronic pain is not the end. 

It may feel like the end of the world, but you can still thrive in this world despite this diagnosis.

3. You can still do the things you love. 

Just because you’ve been diagnosed with chronic pain doesn’t mean you can’t enjoy everything you used to. It may take time and adjustments to do some of your old favorite activities, but you can still participate in your passions.

You may be young and have chronic pain, but you can still live a rewarding and full life. If you have just been diagnosed, give yourself grace and time to deal with and accept the diagnosis. Learning to navigate the rough waters of being young and in pain is a process, and one that is never truly complete.

Winds and directions shift, and you’ll learn new tricks for adjusting the sails accordingly for years to come. It may never be smooth sailing exactly as you want it, but as the cliché goes, calm seas never made a skillful sailor.

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