I had the honor to interview a fellow blogger and in this case You Tuber as well ChronicBabe!
I would like to say, first, that I enjoy ChronicBabe’s work immensely. ChronicBabe is a site that has a pretty motivational and positive frame of mind for coping with chronic illness. Her videos on every Wednesday called AWAP (As Well As Possible), Basically how to cope as best as we possibly can to live the best life we can. And isn’t that exactly what we want?
To introduce you to it, I have some videos in the bottom of the post which I have referenced here and are quite awesome. The How to get Motivated is particularly great to me. Simply because with depression and chronic pain I had some serious issues with motivation. However, treatment of the depression does help with that to some degree. Nevertheless, it was an excellent video. I highly recommend it. I actually spent quite a bit of time on the YouTube channel and picked out three for this post I thought were particularly great topics that I enjoyed.
Let’s get down to some questions,
First, introduce yourself to my readers a little bit. What sort of chronic illness(s) do you cope with and how long have you been coping with it?
I was first diagnosed with fibromyalgia in 1997, and at first I was really freaked out, I feel like my life was completely over. But then after a few years, I started to learn how to take better care of myself and how to achieve the things I wanted to even though I had a few chronic illnesses (because I also developed anxiety, depression, Raynaud’s phenomenon, asthma, and a bunch of other things) and I decided that I needed to take what I was learning and help other people so I created ChronicBabe.com, a space where I could blog about my experience, share resources, and create community.
What are some tips for coping with chronic illness?
The first thing I like to talk to people about when it comes to coping with chronic illness is the concept of acceptance. Some people think that acceptance means giving up or giving in to the illness, but I don’t see it that way. I see it as excepting the parts of the chronic illness experience that I can’t change so that I can stop fighting them, because I need all the energy I can muster to take good care myself and fight for the things that I can change.
I also think building a strong support community is essential this means having a diverse group of people you can call on to help you in times of need. This could be as simple as having a better relationship with your romantic partner, and that’ something you can work on through therapy and shared efforts in building better communication. It can also mean building stronger friendships with coworkers and colleague so that they understand your experience and are more compassionate when you need to have accommodations at work.
And finally, I think that we can’t underestimate the value of a consistent self-care routine. I have a short list of things I must to do every day to be the best Jenni I can be no matter how much I’m flared up. These include bathing, drinking lots of water, putting on regular clothes, meditating, taking my meds consistently and on time, connecting with people I love, listening to music, yoga, and sticking to a regular sleep schedule. By following this routine every day I know that I’m doing the basics that I need to keep myself feeling the best possible about how sick I am.
How do you think we should cultivate resiliency in ourselves to cope with chronic illness? How do we bounce back?
Yes! Resiliency is so essential for ChronicBabes. Resiliency is our ability to bounce back after a fall, after a roadblock, after disappointment. That daily routine of self-care that I mentioned it’s really a big part of my resiliency because I know that by doing that not only am I keeping myself as healthy as I can be, but I’m showing myself a lot of respect by following that routine. That daily respect cultivates A feeling of worthiness and strength and that really helps keep me resilient when rough times happen.
I watched your video on ‘How to get Motivated’ and it was a very productive way to look at getting motivated. Chronic pain, fatigue and depression can all get in the way of motivation. What are three tips to help people start to get on track for motivation?
One thing we sometimes struggle with in the chronic illness community is recognition that depression can get in the way of our motivation. So I always encourage people, If you’re not feeling motivated to work hard in the face of struggle, to consult a mental health professional. Because there’s a chance that they may have depression which is common and not anything to be ashamed of, and is very treatable.
Another thing that keeps me motivated is being very clear about the benefits of achieving the thing I want to do so instead of saying, For example, I have to be motivated to ride my bike every day for 10 minutes just because. That’s not very helpful! Instead, I think to myself YAY I get to ride my bike for 10 minutes today and by doing so, I am getting stronger, which means I get to ride my bike this weekend with my fiancé which is a fun thing we can do together! By focusing on the outcome, the benefit, of the thing that I’m having trouble feeling motivated to do so, it gives me that extra boost, that inspiration that makes me want to achieve the same even though I know it will be difficult.
The third thing that really motivates me when things are tough, and this is not the one I always go to but it is something important to remember, is to think about the negative consequences of not doing the thing that you’re putting off. If you understand that by not doing something you are causing long-term harm or increasing your limitations that can be a great motivator!
Do you think self-care is important and why? What sort of self-care do you use on a bad day?
Self-care is essential! I have a daily routine which I described above that I do without fail and on the rare days when I don’t follow my routine, I feel like crud. On days when I have lots of energy I added extra things like maybe I’ll do a face mask or give myself a pedicure. On big flare-up days, I might go for the bare essentials like instead of taking a shower I’ll just wash my face. Or instead of doing my regular yoga routine plus a workout, I’ll just do my regular yoga routine but I’ll do it in five-minute bursts instead of doing all of 20 minutes at once. I think self-care is really important on a bad day because it helps us feel human, it helps us feel like whole people instead of just sick people.
Our self-identity takes a hit when we are chronically ill and how do we adapt to our new identity or find our new selves?
I agree with this and I think it’s so important that we continue to pursue the things that we love even in the face of chronic illness. One way we can work with this, is to talk with our friends and ask them to help keep in touch with us, and motivate us to pursue hobbies and social interests that keep us connected with other people. I also think it’s important that we make a space and time to pursue activities that have nothing to do with illness.When we first get sick, it’s common to spend a lot of time in forums and support groups, and while those can be very helpful, they can also isolate you into that community and give you no other outlets for expression or activities. I think it’s really important to find balance.
People often get comments about their illnesses. Either ‘helpful’ advice or suggestions on what they are doing ‘wrong’ to even people telling them they shouldn’t be on all ‘those medications’. There is a vast array of things we hear from people, family, and loved ones. What is the best ways to deal with these comments without taking them personally or getting defensive?
Well, you basically answered my question with the last part of your question, which is that I really recommend the people not take these suggestions personally. I have a video about the set my YouTube channel which I recommend that people go watch but in the meantime, I think it’s good for people to practice responses so that they’re ready when they’re confronted with the surprise suggestion that triggers them and makes him feel upset. For example, you may hear some crummy advice from an acquaintance, and a good response may be “thanks for that idea, I appreciate that you care. I’ve got this under control. How are you?” Sometimes if you just turn the conversation around to the other person, it ends the awkward moment and you can move on.
A lot of people work with chronic illness and this can be quite a strain. Any tips or comments addressed to people who work that they might find helpful?
This is a tricky question because there’s so many different kinds of illness, and there’re so many different kinds of work. I think it’s really important to people know that they are allowed to ask for accommodations in the workplace and that if they are in the workplace that will not accommodate them, it may be time for them to seek out some other kind of position. One thing that a lot of people with chronic illness struggle with, is that if they’re unable to do the job they’ve done for a long time, they may feel like they can never work again. But this is not true! It simply means that they’ve got to rethink your concept of work and focus on the values and the goals that they’ve enjoyed in their work in the past, so that they can seek out a better way to work that serves them and still takes good care of them physically.
I absolutely loved your video ‘Embrace the Suck’. Do you think sometimes we don’t push within our limits sometimes and embrace the suck? What would you recommend to people to embrace the suck!
Definitely, sometimes when we’re sick for a long time we get fearful, and we are afraid to pursue new things or push ourselves because we don’t want to cause a flare-up. But sometimes we must push ourselves because that’s the only way we learn how we can do more, and that’s the only way we can figure out what our are new limits are, because those limits are going to change – for some of us – all the time. And if that means there are moments when things really suck, then yeah, you’ve got to embrace suck.
And on the other side of things What do you do when we flare up and exceed our limits?
I’ll just speak from my experience and say that when I flare up, I usually try to cut myself some slack. Sometimes a flare up for me is random, but sometimes it comes from something I know I did, like too much exertion, too much dancing, generally having too much fun! So I try to implement extra measures of self-care on those days and give myself a lot of compassion and understanding and remind myself that we’re all human Oh we can do is our best every day and if we screw up in some time push pastor limits it’s okay it’s nothing Should be ashamed for mad at ourselves about.
Here are the videos I referenced in the interview. Feel free to check them out. I know I for one will be using the term ‘Embrace the suck’ all the time from now on. Love that. I embraced the suck at work today in fact. 😉
I’d like to thank Jenni for the interview and again if you would like to check out Chronic Babes just go to ChronicBabe.com