A Guide for Anyone Who Needs to Support Someone With a Chronic Disease

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Bringing awareness to this guide is very important to me. I found myself feeling all alone after my diagnosis. My whole world changed and I felt that no one understood what I was going through. My friends and coworkers had a hard time understanding the pain I was in. I didn’t look “sick” so I should be able to continue to do the things I used to. Having an “invisible” illness can lead to people being judged and mistreated. So please, if you have a friend or a loved one who has a chronic illness, please read the following tips so your loved ones do not have to go through this journey alone. I ask that you please share this because the more we educate and bring awareness, the more supported they will feel.

So if you are in a position where you need to support someone with a chronic illness such as fibromyalgia, rheumatoid arthritis or any other chronic disease, there are a few things you should know. It will make the entire process much easier, both for you and for the individual who is battling the disease.

Education is key.

Finding out as much as possible about the disease is vitally important. It is essentially the only way that you can arm yourself with the knowledge necessary to ensure both you and the affected individual are capable of dealing with the disease in the most positive manner possible.

Respect physical limitations.

People will try to keep up with you by doing all the same things they’ve done the past. This can be painful for them, both physically and emotionally. It also might make them prone to injury. Remember that they may have physical limitations you don’t have to worry about. However, you should always respect their limitations and choose activities that you can both enjoy.

Look for signs of pain.

Many individuals will not tell you that they are in pain. If you know what to look for, you might be able to help them. Notice when they seem subdued or when they are not quite themselves. Watch how they move, the expression on their face and whether or not they are breathing easily.

Have empathy.

If possible, try to put yourself in their shoes and understand how you would feel if the disease were affecting you personally. This might help you see things from their perspective more readily.

Listen to and validate feelings.

One of the best things you can do is simply listen to what they have to say. Validate their feelings about their disease. Above all, don’t get in the habit of having a contest where you are constantly trying to one-up them with your own ailments. This might be meant as a show of support to help them understand that everyone is battling something, but it often comes across as though you are more interested in yourself than you are in them.

Be patient and helpful.

Do your best not to get frustrated with an individual who is slower or can’t do something because of their disease. Instead of expressing frustration, give them the chance to do what they need to do themselves and then offer help when it is appropriate.

Treat them with dignity and include them in your life.

Nothing is worse than being treated as though you are less of an individual because you have a certain disease. That doesn’t change who that particular individual really is. Try to see past their disease because it doesn’t define them. Include them in your plans and make a special effort to do things with them they can comfortably do.

Be positive.

Staying positive is key for anyone who is battling a chronic illness. Many times, their personal outlook on the situation can have a dramatic impact on the way they feel. Give them the chance to take an otherwise negative situation and turn it into something positive. If you can, help them along the way.

Silence is OK.

There will be times when the individual in question doesn’t want to talk about their illness. This has nothing to do with you. It is OK to simply be together in the moment without having to find something to say.

Remember it’s not your fault.

So many people who are close to someone with a chronic illness blame themselves. There is no point in doing this. It isn’t your fault any more than it is anyone else’s. It is simply something that happened and now it must be dealt with.

If you follow these tips, you and the person who is going through their own challenges can find better and more effective ways to deal with the disease. It is a challenge for everyone involved but as long as you rely on each other, the entire process can become much easier.

Follow this journey on Rockin RA.

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The Moment I Realized My Anxiety Was Getting Better

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Something important has happened.

My boyfriend is out of town this week, and I went to work every day he was gone. I know this seems like duh, why wouldn’t you go to work? But in case you haven’t been following my story for very long, I have a history of having to take a day off while he’s gone because of anxiety. But this time, I went to work every day and I am so pumped. Seriously. On a scale of one to curled up in a ball on the floor of the bathroom sobbing and alternately going to the bathroom and puking my guts out, the most I felt this whole time was a two. I woke up 45 minutes before my alarm yesterday with some tightness in my chest and some rapid heartbeat, but it was gone by the time I left for work. And this morning? Nada. I woke up early, cuddled closer to the dog, and the next thing I knew my alarm was dragging me from the depths of sleep with its stupid incessant chiming. It was glorious.

I know that to people without anxiety this might feel like a weird thing to celebrate. But to me, this is huge. This is the first time I’ve been in a situation that has caused me intense anxiety in the past and not felt any. It’s crazy. I feel like I’ve leveled up in a big way.

I was telling my therapist about it during session yesterday, and she goes how did that make you feel, to know this might go away? And, to be honest, my answer to that question might not be what you think, because it feels like I’ve been dealing with this for so long. Two out of 30 years is not actually that much, but it’s been so intense it feels like it’s eclipsed the not-having-anxiety years. When I think about not having to deal with it anymore, I’m kind of torn. On the one hand, it’s amazing. It’s like I can finally see a future where I’m not dreading traveling, I’m just excited about it. And it feels like I’m getting back to me, to being able to do more and experience more and be a little busier and not need as much downtime. I can see a life with my boyfriend where my anxiety is not something that keeps us from doing things. That’s so awesome, and I’m so excited about it, and it’s nice to be excited. I haven’t been this excited in a while.

I also kind of don’t want it to go away completely because, in a weird way, anxiety also makes me feel really grounded. It forces me to care for myself in a way I never really have before; I always just kind of barreled ahead and told myself I would deal with things later and then never did. Anxiety doesn’t work like that. I have to be in the moment; there’s no way not to be when the physical symptoms are so intense. And I have to be mindful of it every day. I’ve changed my life to accommodate things I know help, and that has been great because it means I’m accepting it by making room for it. I’m not fighting it. I still have those moments where I really don’t want to go to the gym or set up all of my yoga stuff — still working on looking forward to exercise, ugh — but each time I’ve reminded myself that this is part of accepting anxiety’s place in my life. That going to the gym is helpful not only because the endorphins are great for my brain, but even more so because it means I’m making space for anxiety and I’m practicing noting its presence and then letting it go. Which is awesome for when I’m actually feeling anxious — it’s so much easier now to be like oh, hey, my chest is kinda tight. Let me belly breathe for a minute and then go about my day.

I cannot explain how freeing that is. What a huge sense of relief I feel. It’s kind of like when you’re playing a video game and your character dies again and again and then finally you start playing the level that gives you trouble and all of the information from your past lives clicks and you beat the boss. I feel like I just kicked the boss’ ass and now I don’t really care what I have to deal with on the next level because this one was so hard.  Beating it has made me feel like I can take on anything.

And I know, too, I won’t always feel like this. That I will probably still feel pretty anxious on our next trip, and I will still feel like throwing up on my wedding day, and I will still want to hide from everyone sometimes. And that’s OK. It’s even good — those feelings tell me I’m highly evolved and I care. It’s weird to realize I’ve actually kind of come to love my anxiety a little bit, and to know I would (only slightly) miss it if it went away completely, because it helps me cultivate my empathy and compassion not only for others, but for myself. And it’s made me healthier because now I go to the gym and own a ton of workout gear and that is not ever a thing that I thought would happen. Anxiety has made me proud of myself in a way I have never been, and that is such a wonderful, unexpected result of my time in therapy.

Follow this journey on It’s Only Fear.

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I'm Not Anxious. I Have Anxiety.

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Thanks for asking, but I am not anxious about any specific thing. I don’t have anything specific that is worrying me. There is no real and pressing immanent doom. Not really. I am not anxious. I have anxiety.

Instead, I have a liar that lives in my head. The liar was planted in my head many years ago and is part of my complex post-traumatic stress disorder (PTSD).

The liar tells me I am incapable. It tells me I am ugly. It tells me I am not worthwhile, and it’s probably not worth trying. It tells me I am foolish. It tells me my life isn’t worth living. It’s a draining soul-eating voice, and it rules my life sometimes. There are times the liar immobilizes me.

I also have low self-esteem based on failures the liar has caused me and based on my history with the liar. Together, the low esteem and the liar can create a psychic pain that is palpable physically. The pain starts in my chest and travels along my arms. At those times, I sometimes want to die to get rid of the pain. I feel worthless, hopeless and useless. At times like that, the act of holding on and continuing to breathe and even to exist takes all of my will and courage. And I do.

Medications help some people. I don’t take any medications. They don’t work for me. I just hold on and do my best. I really do.

I remember the times I used to have hope, and I hold onto those times. I force myself to do things, to get out of bed, to shave and to shower and to work out. In horrible pain, I push myself to go and write daily. I push myself to go perform comedy at night. Still, the liar is subtle and remains with me

The liar tells me people don’t like me. The liar tells me I am not good enough. It will allow me to make my way, all the way to a comedy performance and then just when I think I am safe, the liar keeps me from entering the establishment to perform. I have taken public transit, which is a soul sucker of another sort, and just as I am about to defeat the liar, it wins!

And yet there are some ways to, if not completely defeat the liar, make his power over me smaller. There are small victories that over time can build into successes.

I work out daily. I walk on the treadmill for a minimum of 45 minutes a day. I watch my diet. I meditate on a regular basis. Meditation has allowed me to separate the voice of the liar from the other voices. I make myself get dressed and leave where I am staying every day. I write this blog.

I keep myself occupied.

I try not to compare myself with others. I have learned comparing who I am with what others have is a way the liar likes to beat me up. I try hard not to do that.

I no longer use alcohol or pot to try and defeat the liar. I was in trouble the first time I had a drink because, for a time, alcohol silenced the liar completely. Pot made me friends with the liar. For a time the liar and I coexisted, I thought happily, with the aid of alcohol and pot. Then the liar became demanding. It wanted more and more and more of me and more and more and more pot and alcohol. And more. There were times I was high all day long. Then, over time, alcohol and pot stopped working. It took more and worked not at all. That’s why, today, I choose, for myself, to stay sober. Some people claim pot helps them and it probably does. For me, I have to stay clean and sober.

I wish I knew where my life was headed. I wish I knew what was going to happen next. Right now, I am on disability and I am technically homeless. I try and stay optimistic. Maybe my writing will work out to be a job of some sort? Maybe I will become well enough to work. Maybe I will be stuck here for the rest of my life. I try to not despair. Despair is what the liar uses to defeat me.

I do what I can, one day at a time.

This post originally appeared on Medium.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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So, You Think Anxiety Isn't Real

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The picture is my psychiatric service dog with me during an anxiety attack
The picture is my psychiatric service dog with me during an anxiety attack.

After a year and a half of hospitalizations, misdiagnoses, countless medication changes and many unanswered questions, I was fortunate enough to get an evaluation appointment with one of the best mental health specialists in the country. My parents and I drove six hours south to meet this doctor to hear his opinions on my diagnosis and future treatment.

The evaluation process took more than five hours. At the end of the day, the doctor said, “There is no need for her to be on antipsychotic medication because she actually has a severe anxiety disorder.”

My parents were so happy to hear this prognosis, and everything the doctor explained about the onset, symptoms and reactions I had to medications made sense. At the time, I couldn’t wrap my head around the idea that I had an anxiety disorder because I didn’t understand how the severity of what I was going through was a term I heard people say every day. Many times people use the word “anxiety” when they are describing feeling stressed or nervous about something. When I heard the doctor say “anxiety disorder,” I thought he meant I was just a nervous person. After learning more about anxiety disorders, I realized they are real psychiatric disorders that can consume and change someone’s life and future.

An issue I’ve seen many times for people with anxiety disorders is others’ belief that anxiety isn’t real. When people are dealing with anxiety, one of the most damaging statements they can hear is that they are making it up or exaggerating their feelings. Some common examples are phrases like:

“Everyone gets stressed.”

“All students go through this at the end of the semester.”

“You just need more sleep.”

“She’s just trying to get attention.”

As a woman with an anxiety disorder who also has friends and family with anxiety, I’ve heard countless versions of these statements. I usually don’t dwell on the limitations I’ve had to deal with due to my disorder, but what I’ve faced over the past few years illustrates that anxiety is real and should not be taken lightly. For those who think I’m “doing it for attention,” consider this:

I gave up my privilege to drive at night because I became afraid of driving in the dark. I had to change the career path I’d wanted since the seventh grade because I knew the job environment would trigger my anxiety. Why would I want to leave the part time job I’d loved for five years? Why would I throw away three years of college after being so close to
getting my teaching degree? Why would I want to spend three months in the hospital away from my friends, family and brand new kitten? Why would I spend Thanksgiving in a hospital three hours away from my family? Why would I want to take medications after living my whole life drug and alcohol free? Why would I stay home from my best friend’s bachelorette party in Atlantic City? Why would I want to face mental health stigma? I have to see people graduate college, get their dream jobs, buy their first houses and take spontaneous trips just because they want to. Why wouldn’t I want to experience those things too?

This is how anxiety has had an impact on my life. I’m not using anxiety as an excuse to skip school, get out of a test I forgot to study for, get extra time on a paper I put off doing, leave work early or avoid my adult responsibilities. When people use the word “anxiety” as an excuse, it essentially tells the world that people with diagnosed anxiety disorders can turn it on and off and are just exaggerating their symptoms. Nobody would want to go through a battle with mental illness if they had the choice. We are not doing it for attention.

Anxiety is a disorder, not a decision.

Follow this journey on Redefine Mental Health.

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The Social Anxiety Window

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This post is part 2 of a 3 part social anxiety series. Please click here if you’d like to read part 1 before continuing. Otherwise, read on.

There is something I call the “Social Anxiety Window.” This is the amount of space and leeway where people feel comfortable when having a social conversation. For example, some people feel they can engage in light small talk and prefer to keep the conversation focused on the other person. This keeps the topics on the surface and avoids bringing oneself (or even both) into the conversation. This is representative of a fairly tight window.

For a socially anxious person, having a tight window for acceptable conversation tends to reinforce the anxiety because once the other person has said their part, it leads to conversation jumping. Searching for different topics in a conversation tends to be a more difficult mental exercise, as opposed to expanding a topic into broader conversation. What often happens with social anxiety is there is more focus on thinking of the next question to ask to keep the other person talking, rather than trying to find a way in to engage with what is present.

A tight window makes the fluidity of the conversation quite difficult, and also impedes the conversation from being able to take its own shape between the two people. It becomes heavily constricted by the limits of the window. Meaning — if you don’t feel comfortable bringing yourself into the conversation, the conversation weighs completely on the ability for you to generate questions the other person can continue to respond to; and if there are only certain topics you feel are safe to discuss, then the conversation can only go as far as the topics you feel safe with (for some — this may be just the weather, or surface conversation about family or work).

On the flip side, a more open window indicates a person is more willing to take risks by bringing themselves into the conversation (risks of judgment or rejection by allowing themselves to be more known), and also allowing more room for comfort with topics. Rather than simply small talk, a person may bring up an issue they are having at home or work, or otherwise, that seems to fit in the conversation; or may bring up something passionate to see if the other person can relate: sports, TV shows, dating, hobbies, etc. Not only is there more room to be yourself in an open-window conversation, but it allows more possibility of connection by finding common ground in emotional areas.

Listening for cues for where you can bring yourself into the conversation, as well as where you can deepen the conversation, helps open both of your windows for more fluid and connected conversation. It can take topics deeper and can bring in a variety of topics. The closed window is more constricted and reinforces anxiety, whereas the open window allows room to breath and relaxes anxiety.

Obviously, the whole conversation isn’t completely up to you alone, as there are two people involved. Hopefully the other person will ask you questions as well, and hopefully they will have an open enough window that can assist in you opening yours a bit more. But it’s how one approaches a conversation in this area that can make a significant difference in the level of comfort/discomfort one experiences.

Why is it important to understand your own Social Anxiety Window?

If you can understand the limitations with which you approach a social environment and where you may actually reinforce the anxiety, you can take steps to open the window in these areas. Don’t expect it to be an overnight change, but as you become more comfortable with the adjustments, you’ll see it start to pay off. Next time you’re in a social conversation, try some different things to help open your social anxiety window:

  • Branch off what the other person is saying and include something about yourself on the same topic (“I so understand what you’re saying.. .that happened to me last week… ).
  • Branch off what the other is saying, and introduce a new topic (“Oh yeah… that reminds me of this time when… “).
  • Ask about something that interests you to see if they can connect. If they can’t connect to it, ask what they like to do. (“….I like to get out and run when I have a moment of free time… that’s not your thing, huh?… What do you prefer, what’s your thing?”
  • If the other person is talking about something emotional or passionate, ask more questions (use the active listening skills from part 1). It’s OK for the conversation to stay on the other person when it seems they could use support.
  • If you’re passionate about what you’re talking about and the other person seems interested in it, don’t be afraid to say more. It’s OK for the conversation to stay on you for a bit. Just remember to eventually bring the conversation back to the other person, if they don’t do so first. (If you’re both passionately into what you’re talking about, you won’t have to think so much).

Essentially, what we’re going for with the Social Anxiety Window is the ability to create a balance between bringing the other person in and bringing yourself in to connect, while allowing room for more depth to more topics that go beyond the general small talk. There is more emotional risk with this, but just like with relationships and love, one can’t have the rewards without taking the risks along the way.

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When I Had My First Panic Attack, Nobody Knew What It Was

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It’s not easy having it at a young age, especially when you don’t realize what it is until you’re almost an adult.

Growing up, I never realized the issues I had (anxiety disorder and depression) were mental illnesses or something uncommon. My family only knew the symptoms of schizophrenia and a bit about depression, seeing that we had family members who had those.

The first time I ever had an anxiety attack was at the age of 8. Life at home wasn’t really great and I was always worried about my mother (who dealt with a lot of harsh things). I don’t exactly remember why or what I was over thinking about. All I can remember is going to the doctor’s afterwards.

I was crying at home telling my mom I couldn’t breathe and panicking. So of course, my worried mother took me to the hospital assuming I was having an asthma attack (my brother and father has asthma, so it wouldn’t be a surprise if I had it, too). I went to the doctor’s and he tested me for asthma and did other tests. He concluded I didn’t have asthma, and that I was possibly lying about my symptoms. He told an 8-year-old who was crying and unable to breathe that she was lying and making it all up.

After that, I stopped telling the doctors about the breathing issues I had, thinking nothing was wrong. So for another eight years I coped with it, along with depression that came soon after, whether it was in the middle of the day, after I woke up, or even in the middle of the night when it would wake me up. Even in the middle of dinner I would have a full-blown episode. I was so anxious all the time and couldn’t even focus on my school work or daily routines. I began to fear every waking and sleeping moment, worried I would lose my breath. It started to control my life.

Finally, sophomore year of high school, I told my friends about my situation and issues. Most suggested it could be anxiety and that I was having anxiety attacks. So I researched for days to see if my symptoms matched up. Which they did — down to the T. It was weird for me. I denied it instantly. I didn’t want anything to be wrong with me and become a burden to my mother. Still, I endured it, and it brought on a lot of issues — unable to wake up and face the day, living in fear, skipping school to where I almost failed and couldn’t do much anymore.

However, with more issues at home, I never brought it up. It wasn’t until I turned 18 and had another horrid episode at home while a friend was sleeping over that my mother realized how bad it was. (Actually, she realized it was bad when I collapsed to the floor crying and on the verge of passing out). She left work early when I called her the next day and took me to the hospital. I couldn’t take it anymore, and after dealing with it for 10 years I finally caved in.

I was scared to tell the doctor the symptoms I was having in fear of being rejected (this doctor also had no clue what was wrong), but I caved in and told her everything. And after listing all the symptoms, I told her it might be anxiety. After that, she nodded and gave me a prescription for some medication to try, telling me to come back a month or two later to check in.

I’ve been on the medications for about three months now, and I haven’t had a major panic/anxiety attack since. And when I do have one, it’s minor and doesn’t disturb my sleep.

If you believe you have something and show all the symptoms, consult your doctor and ask them. It took mine 10 years to finally realize what was wrong and give me the proper medications. It is worth it, especially when things start to get better, you begin to function properly and suddenly, you’re able to face the day.

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