Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others.
Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others.
What gives you the greatest joy and puts a smile on your face?
There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning!
What has been your greatest obstacle living with your conditions, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?
Stigma and high functional ability are the greatest obstacles. Because people can’t physically notice all my diagnosed illnesses on a daily basis (bipolar II, fibromyalgia, diabetes and other mental health illness) due to me being so highly functional. I have been denied much-needed services such as disability and compassion among others because I can mask how severe I am at times due to societal expectations of being what is normal. Society needs to start to recognize that we all are different and experience some different type of hurts/traumas in our lives but some of us can’t recover as well from those things. That does not make us less than. Instead of shaming us for displaying a need for help, society needs to encourage and applaud the strength in getting help. It starts though with ourselves not feeling embarrassed about our illnesses, whatever they may be, then family and friends and hopefully society.
How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?
This is hard for me to answer because many of my conditions (diabetes, fibromyalgia, mental health illness) are not seen and overlap. The best way to describe I think is that I know I have the potential to do great things, but mentally, physically and emotionally I struggle so hard to achieve this. First, I constantly talk myself into waking up in the morning, moving around, taking medicine, getting dressed, eating, overcoming fears, slowing down on taking on the world, filling out paperwork, and other basic skills that people tend to take for granted. I am a high functioning person so I’ve adapted to societal ways, but physically I’m in constant pain, the kind where every joint, etc., feels like a train has hit me and nothing I can do takes it away. Mentally, I am in constant battle of trying to build myself up while tearing myself down, remember little tasks and trying not to be confused (because I am intelligent and it makes no sense that I can’t remember simple things anymore). Emotionally, I am constantly finding exits, bathrooms, etc. in case I have a “melt down” so I can do it in private. I act cold, inappropriate and ruin relationships because I misunderstand things emotionally. All because I don’t want to be a bother or appear weak.
If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
Research, research and research. I am a big reader and nerd already, but the one thing that has helped me is knowing what I am talking about when I go into the doctor’s offices. They may not believe you because some doctors are not up on research, but at least I know what tests I should ask for, medicines I should try and treatments to seek. If you can’t get it from a certain doctor, be an advocate for yourself. Just because one doctor says one thing, doesn’t mean it is entirely true. You can always change doctors, hospitals, etc., I never understood that. Another thing is keep track of symptoms, changes, etc. It helps to know when your condition is getting worse or better.
How important has it been to you to find other people with your condition who understand what you’re going through?
Very important. Without finding PatientsLikeMe.com in April 2016, I think my life would have been very different at this point. This site has given me courage, comfort and belonging. That was my major piece missing in my recovery of self, a sense of belonging…and finding non-judgmental and understanding strangers who get it is rare. This site brings everyone together and then some!
Recount a time when you’ve had to advocate for yourself.
I am always having to be a constant advocate for myself with doctors and my state funded insurance. It is SO frustrating and many times I want to give up, but I know no one else is going to do it and something needs to be done. Here is an ironic situation I run into a lot: I have applied for bariatric surgery 5 times. I’ve been denied 5 times due to mental stability, yet I need multiple test services, etc. and when I go to get the prior authorization, I am denied stating I need to just lose weight. Hmmm…interesting. You won’t pay for the surgery, you won’t pay for the coverage to get better sleep to lose weight, but will pay for me to see a doctor at least 5 times a week and 21+ pills a month. I also just had my 7th surgery on my knee. I am going to continue to fight because it makes no sense. Just because I have state insurance and I am overweight does not mean I should get unfair treatment.
How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?
Because of PatientsLikeMe, I have found a new desire to become a better patient and to be there for other people who are not aware that there is hope for their condition. I started on this site because I was tired of how I was being treated as a patient and I found hope on PatientsLikeMe and comfort with other members. It brought me out of my depression at the time. Any time I talk to someone, (and this was before I was on the Team of Advisors) I would tell them about this site because I felt it was just a great way to not feel alone anymore and to get knowledge. I’m able to cope better knowing that if I am having a bad day other people will be supportive and give well wishes or advice. That is so comforting when you are depressed…just knowing someone in this world cares.
What made you want to join the PatientsLikeMe Team of Advisors?
I wanted to help other people like others have helped me on this site.
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It is so amazing to read about how others feel and cope with theI illnesses. This personal story is nothing less than wonderful and poetic in it’s truth about coping with these illnesses. Thank you, Lindsay, for being brave and honest!
Your story is similar to mine with some what not exactly the same. You read was absolutely and most likely as precise to mine. I like to make friends and repair all the bridges that I’ve burned in my past. I’m in a recovery program that for fills my ambition to live. My disease liked to take me away and take me straight to hell and never come back. It was only back in 2008 that the Doctors gave me 4 years to live and that wasn’t acceptable to me. I thought at first that recovery was only just a fluke but I found what I needed to go on living. This was 10 amazing years ago. I’ve had an about face on life and I hold on to it everyday. I pray like I should and help others every single day. I go to a lot of meetings with a attitude bar none. I have liver disease, leg pain, and many back problems. Carpel tunnel disease on my left hand making simply things literally impossible for me to do. I can’t walk due to a broken ankle that at least my Doctors won’t touch because of my COPD that’s in stage 4 and I may not survive any kind of surgery. So yeah I suffer in sort sort of pain or discomfort every single day. However I continue each day with good spirit. I don’t think that this feeling that everything is simply out of control and there is nothing I can do about it because I can and will succeed in anything I want.
Thank you Lindsey for your openness and vulnerability so many will be helped by your sweet soul!
I understand, I am struggling with the same three things. I would like to ask more but can’t at this time I am so drained but will save so I can read again. I. Do hope you ok hugs
I have to tell you abou this. Ill be 62 in june. I have a friend a few years older than me that has found great remedies for different illnesses in her life that have actually worked. This one does. Dont know if Incan post a pic here, but she told me about using Mucinex with guaifenesin for fibromalgia. I bought the dollar general store brand of fast acting mucinex relief. It works! You will start feeling better after your 2nd dose;at least I have. It also relieves the fatigue. Im not in the medical field. Just letti g others know what I have found. Look guafenesin up for fibromyalgia. Big article on it. But it can take 2 to 3 days to really show a change. Lyrica was not working. This is a god-send to me.
Lindsay,
You are AWESOME! I have watched you for over a year. You are changing (for the good). You’ve become such an inspiration to me that I had to come to the site and read about you. Though my battles are different asthma, allergies and diabetes. I felt like they have destroyed my life at times. But watching you change since I met you has been enough nothing short of a miracle for me. I plan to share patientslikeme with my family. We have so much going on with so many illnesses that meeting you will not just change me but a huge family! I can’t thank you enough for your strength and courage to share your story!
Your story is similar to mine with some what not exactly the same. Your read was absolutely and most likely as precise to mine. I like to make friends and repair all the bridges that I’ve burned in my past. I’m in a recovery program that for fills my ambition to live. My disease liked to take me away and take me straight to hell and never come back. It was only back in 2008 that the Doctors gave me 4 years to live and that wasn’t acceptable to me. I thought at first that recovery was only just a fluke but I found what I needed to go on living. This was 10 amazing years ago. I’ve had an about face on life and I hold on to it everyday. I pray like I should and help others every single day. I go to a lot of meetings with a attitude bar none. I have liver disease, leg pain, and many back problems. Carpel tunnel disease on my left hand making simply things literally impossible for me to do. I can’t walk due to a broken ankle that at least my Doctors won’t touch because of my COPD that’s in stage 4 and I may not survive any kind of surgery. So yeah I suffer in sort sort of pain or discomfort every single day. However I continue each day with good spirit. I don’t think that this feeling that everything is simply out of control and there is nothing I can do about it because I can and will succeed in anything I want.