Positivity With Chronic Illness, How It Can Affect The People Around You and The Best Ways You Can Help

Having chronic illness comes with many challenges including non- physical ones. When it comes to having an invisible illness, those challenges are often exacerbated on your mental health. Today I’ll be sharing what I do to stay positive with my Postural Orthostatic Tachycardia Syndrome, the ways I’ve noticed it affects the people around me, encounters I’ve dealt with with medical professionals and strangers, and how I have met new friends who I can relate to.

Acceptance and learning the people who love you are struggling too...

From the beginning I accepted what I was diagnosed with, and didn’t let myself fall into a stage of denial. I found that the people around me had a harder time with that than I did to be honest. Deciding to accept my diagnosis and use my spare energy in learning more about it helped me tremendously.

Different phases of being in denial...

When I was first diagnosed, the first few months I had many people reaching out, suggesting I get multiple oppinons, trying to convince me it’ll pass, and telling me to not remind myself of it by not looking deeper into it. Because of course it’s coming from a place of love and care. But being in denial by constantly doubting I have something, trying to convince me that it’s only for a short period of time and trying to convince someone to not be their own advocate for their health only helps the person suggesting it not the person receiving the advice. I used to get frustrated by it to be honest, but now I’ve learnt that it comes from a hard place themselves. It’s not only hard for the person receiving the diagnosis but also for the people around them. I try to remind myself that I am not the only one having a hard time with my health and that the people who love me struggle to.

When you live your entire life having medical related issues that aren’t being taken seriously by your Doctors you begin to suppress some of it. And you begin to unfortunately normalize this behavior because just about every new Doctor you see reacts to you in a similar way. So when you finally have a Doctor look you in the eyes and listen to your problems, scold the people who demeaned you and finally take you seriously you have such a sigh of relief. Because you aren’t dramatic, aren’t a hormonal teenager or woman, or looking for attention. You are human, you are unfortunately capable of being ill regardless of your age and gender.

I totally understand how multiple oppinons can benefit someone. But why when you finally receive a diagnosis that in fact makes sense, after never being taken seriously or listened to by a medical professional start to back track by being in denial yourself and looking for different answers.

Reminding someone not to look into their condition makes no positive impact on their lives. It’s incredibly important for the person with the illness to educate themselves about their condition. When you can educate yourself on what your condition is and any information associated with it, it can help you better manage and lessen your symptoms. I am the one living with this condition 24 hours a day. If I see my Doctor once every few months, it is my job to help provide him with my symptoms because it takes the both of us to make changes. Without the patients help providing vulnerable information it is impossible to get treated. I can’t be diagnosed without sharing with my medical team what I am going through. But with all that being said, how am I supposed to know my symptoms given so much of what I know is my normal? Had I not looked into my condition, I wouldn’t have realized so many symptoms I have had throughout my life are not what everyone felt, and that they were infact issues.

For the patient and the friend, avoid over reading and find reliable sources…

I say this with the intention to spread awareness and understanding. If google is good enough for the “able” bodied person to look into, it is even better for the person living with the chronic illness to look into. Given I am the main person capable of making positive changes in my body.

Now with the whole topic of self educating I should clarify, I do fully understand phantom symptoms and how those work and totally understand how reading too much can do more damage than good. And have never in my lifetime have ever self diagnosed myself and gone to a Doctors appointment as a micro manager. I also understand that for the most part if I’m getting these types of comments than it’s most probably coming from a place where that person just doesn’t want you to over analyze, and take things out of context. Again, of course coming from a good place. Over time I’ve learnt that I really only rely on a couple sources to get my information from. Because let’s face it, research constantly contradicts itself and it’s hard to find consistency online. And it seems just about every symptom you look up is a symptom of a number of other conditions. It’s always best to rely on your Doctors information.

For the people who don’t have the chronic illness, remind yourself. The person with the condition may have spent majority of their life not being vocal about it. And when you don’t speak to that person often you should always remind yourself, what you talk about when you do see them has no reflection of what is discussed or thought the other 95% of their time.

Constantly trying to convince the sick person in your life that they won’t always be sick is frustrating for the person that has been diagnosed with a chronic illness. Since no one really knows. And it is a chronic illness for a reason. The definition of the word chronic is: persisting for a long time or constantly recurring. I realized fairly quickly that this is something that negatively impacts the people who love you and this is a common way to handle it. Which is OK.

Continue to be your own advocate and not fall into medical gas lighting...

This is a topic I’ll be getting into in a future blog post. But I thought I would just list it quickly. It’s easy to fall into a depressive state when you feel like your voice isn’t being heard. Over and over again. If a Doctor is making you feel belittled, dramatic, or not willing to hear you out. Simply find a new Doctor that will work better for you. It’s important not only for your physical well being but your mental being also.

Don’t take too much on in one day...

Have small goals everyday and don’t take on too much. When chronic fatigue kicks your butt daily it’s important to have small goals everyday so you don’t get lead into disappointment when you can’t check off everything on your list. Over time I learnt this after constantly feeling guilty that I wasn’t getting what I said I would get done. Even if the goal is as small as walking to get the mail and back or getting groceries find ways to help you achieve that. Doing the next errand the day after or working ahead of time with your legs elevated so you can take longer strides.

Keep moving.

This one is easier said than done. I try to keep moving and not let myself get into a rut. Besides the benefits of moving, like exercise and aiding in blood flow and circulation it’s important for your mind. I work from home, so it’s easier for me to lack motivation to move than others based on being home alone all day and having little accountability. I work on a computer and don’t need to be active to get my job done. But I’ve learnt that having down time helps me generate more energy. So I take breaks throughout the day to get cleaning done, leave the house for a little bit or simply just walk around at home. It’s healthy for me, but also keeps me from falling into a rut or feeling guilty.

If you have the energy for it, leaving home to get some groceries and making a little extra effort to get yourself ready every once in awhile feels really satisfying. Since I work from home, these little victories make a difference in my life.

Be mindful of others and remind  yourself what others could be dealing with…

This has gotten to the point where I don’t need to remind myself anymore. Because being in a position where I have a invisible illness I’ve become self aware. It’s made me think of how other people might be fighting their own battles that may not be so obvious. So, I often give people the benefit of the doubt more than I did before. This helps me stay more positive and not sweat small stuff.

Join a support group…

Since Joining the POTS support group on Facebook hosted by Dysautonomia International, and their Canadian groups this has helped me tremendously. Meeting people who are going through similar experiences as I am, and hearing the way that others deal with their own symptoms has helped me in so many ways. Being able to ask vulnerable questions for insight has been eye opening for me, and often has given me alot of hope in certain aspects. It’s helped my acceptance, my management and my education. It’s valuable to be able to learn so much through others. I also love how the hosts of the group share new medical information and resources for Doctors and specialists. Being apart of these support groups are often free and you realize fairly quick how priceless it is.

Surround yourself with strong support…

I’ve learnt so much about friendship since being diagnosed and how having supportive family and friends around makes my life so much easier. My husband has been my biggest support and always takes care of me when I need help. He has made my journey so much easier than it could have been and I am so thankful to have him by my side. If you don’t have someone to lean on, please reach out to me and/or join a support group. Stress affects Dysautonomia in a unique way compared to the average person. It’s important to find your own outlet. Your worthy of your health and happiness.

Being honest with yourself and the people around you…

Making your health a priority, being honest and not worrying about being a burden. It’s all easier said than done and I’m still learning this. I worry about making people uncomfortable, drawing attention to myself, or having other people do heavier lifting than I am. At some point, you just have to stop caring, if whoever has something to say about it negatively they aren’t worth having around. I’ve learnt a lot about how equality is about the effort put in. Never let yourself be drawn into those sad thoughts of how you can’t do the same amount as the other person in whatever way that it. It’s all about the effort and intention.

I realized how much the people who care about me want answers too, and want to help in their own way. I started by answering questions honestly, and am constantly practicing being physically honest by not pushing through my pains and putting my health as a priority. Sometimes I may have to lay down at a family function or walk away from a conversation all together. This has taken a great amount of practice over time.

Sharing your experiences publicly and trying to help others who need it… 

I’ve learnt along the way how much I suppress and hide. Which is a large reason why I made the effort to open up online. The blow was a bit easier, and I’ve found that I’ve been able to answer questions more clear and concisely since. It’s helped me connect with people who are going through similar experiences and has done a lot of emotionally healing. Of course going as far as I have with sharing on my social media and blog about my journey isn’t necessary. I suggest being honest with a close friend or family member and branch out from there.

Receiving suggestions from others...

I never want to come across as un-thankful. When you live with a condition and have done your research often times when someone takes the time to make a suggestion you’ve already tried it. Because you have most probably done more research than they have and also have the insight from discussions with your Doctor. Since your reminded by your condition more than daily your often trying out new ways to better yourself. To ease your symptoms or to make something pass faster than expected. Suggestions are appreciated but often to be honest unnecessary. It’s never a bad idea to open a conversation, just be understanding that it most probably has been tried, or the person has limitations of that topic for a personal reason.

Not having assumptions...

It could be something as simple as, you assume that person will be OK to make plans ahead, but when the plans come around they cancel last minute because they are unwell. This is a mere example but is a easy one to relate to. My chronic illness specifically can be unexpected at times, and often leads to disappointment when I can’t do the thing I was excited to be apart of. Sometimes for POTS you can drink your water, be on top of your salt and not miss your medication but something still goes wrong.

Not having judgement…

This typically goes hand and hand with assumptions. Since we discussed the topic about health conversations and self education I’ll use that as a example. Try not to judge what’s going through someones mind or how they manage their condition with or without their Doctor. It’s easy to judge how much someone talks, thinks or researches something when you dove into a topic during one conversation. But aren’t actively around them or chatting with them daily.

This month specifically since I’ve dedicated my entire blog to Dysautonomia Awareness Month has made medical discussions much more prevalent than usual since I am doing a lot more research than normal, and publicly sharing my blog posts opens conversations with others when they approach me after reading them. I am being mindful of how much my words can impact the lives of others. So on average, I am not looking into this stuff critically I am just being mindful since I am publicly making these discussion and don’t want to impact anyone’s lives negatively. Since I do blog as a hobby in my spare time, and these are the topics I am actively working on this month it only makes sense that it would be a little more prominent as an outsiders perspective.

My best suggestion for someone wanting to help...

The best suggestion from someone with a chronic illness to someone wanting to help would simply be to ask. Ask the person what you can do to help. I honestly don’t think to date I’ve had someone approach me as simply as that. A simple “What can I do to help you?” Would make it easier on both you and me! And anyone else dealing with an illness of any kind.

I often have thought this prior to a certain event. When you for example get invited to an event, your often expected to stand and mingle for long periods of time. I struggle with standing for extended periods due to the effects it has on my circulation, blood pressure and heart rate. Being able to have a seat is critical for someone like me.

Asking eliminates all the exhausting discussions that lead to disappointment when it’s yet again something you have already tried that hasn’t helped when offered a suggestion. Or when you have reason not to do that specific action and may not want to share why. Asking should eliminate assumptions, judgments and would be easier than making a suggesting.

While don’t get me wrong, a certain diet, exercise, medication, or way of living outside of the event may help often times events, social events where there’s loud discussions layered with music or other background noise etc aggravate symptoms and at that point it’s not about what I could try tomorrow it’s about what I need to do right that moment. Preventative steps by asking someone what they could do to help in those situations would help to prevent feeling symptomatic. Or help the person when they would need you most, during an episode or when they are starting to feel symptomatic.

And I can’t forget, reading these posts! I’ve tried my best to write out scenarios and examples, and to be blunt when it needs to be. But making yourself aware of what the condition is and how it affects and relates to the person close to you is such a thoughtful gesture. It shows that you care and it’ll help yourself in reacting in the future whether that relates to a conversation or a event.

I hope with touching base on all these topics brings insight to people who have someone in their life living with a chronic illness. I also hope that anyone living with a chronic illness can relate to this. Please reach out to me if you are wanting someone to talk to, or have a question to ask. Thank you for reading!

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