Author: amypgrew

Medical Self Advocacy, Self Care, and Your Career

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I’ve previously discussed on this blog the unique work ethic and personal characteristics that are born from the trial by fire that is chronic illness and pain. But let’s be real. Managing a career while having a chronic illness is hard. It requires a lot of extra time, energy, and forethought to say the least. Having a robust self care routine is crucial to daily success and is definitely not optional. Today’s blog post will be about the self advocacy and self care required for business and career success while working with a chronic condition.

First of all, you should not be alone in this effort of self care. You will need a lot of help and support from your medical care team. As an example, chronic pain can have a significant impact on your daily work experience and you may need daily pain management to be at your best at work. However, getting proper treatment for pain can be difficult to say the least. This is where being a strong self advocate can make a huge difference in not just your health and quality of life, but in your ability to function and carry out your job as well.

So what does a good self advocate do? Your entire care team, including your general practitioner and relevant specialists, should all be aware of and fully bought into your career goals. I know, I know… shouldn’t you be getting proper treatment regardless of your career goals? Yes, you should be. However, the fact remains that general practitioners and pain specialists alike are becoming more and more hesitant to prescribe even obviously medically indicated pain management. It can be immensely helpful to communicate what you are looking to get out of your medication. Are you just needing to make it through a work day? How many productive work hours do you get out of each dose? Does your dose cover the whole work day or just part of it? How much does your medication help you function and how does that translate into increased career and life success for you? Providing this information to your care team will help them stay motivated to better serve your career related medical needs. My care team knows that I have my own business, that I’m fund raising, and that I have many big goals that I need to feel my best to achieve. My doctor having this knowledge helps her to better help me.

Outside of medication management, your self care routine should include physical activity and good sleep hygiene to further support your health related goals. Maintaining healthy energy levels is crucial to working while chronically ill, so the importance of sleep and exercise cannot be overstated. Exercise can of course be difficult for those with pain or muscle weaknesses or imbalances, so get started with a physical therapist and slowly ramp up your activity level. Physical therapy can also be a great opportunity to address career specific postural concerns. Do you have trouble sitting or standing at your job for long periods of time? Does your job require repetitive movements or uncomfortable work stations? Bring this up and address it with your physical therapist. It’s important to not stop with physical therapy, however. Get a gym membership and continue your exercise outside of physical therapy to keep seeing benefits.

Make self care and medical self advocacy one of your career goals and you will see results. Make sure your medical team cares about enabling your dreams and if they don’t… get a new team that does.

Visible and Invisible Illness at Work (the Rock and the Hard Place)

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I traveled back to my hometown, Huntsville AL, this week for business meetings. I picked up some gnarly laryngitis at the airport and was pretty sick for most of my trip. I ended up losing most of my voice, with it being reduced to a raspiness that made my sickness obvious to anyone I spoke to at all. This provided an interesting new experience for me – conducting business with an outwardly obvious physical illness.

Of course I am well used to working and achieving while ill, sometimes quite ill. The difference is that my usual ailments are concealable the vast majority of the time. I have sat through meetings stoically with my bladder on fire. I have walked miles with a heavy backpack with my back aching like its about to break. I have smiled and said “I’m doing good, how are you?” when I am in pain that the average person has never experienced and likely never will. My tears are reserved only for pain that is worse than usual.

With my voice so effected, there was no way of concealing this one. It was interesting to see how people deferred to me, how they wished me fast recovery and told me to rest. The people around me were impressed that I carried on and worked so hard despite being so sick, never cancelling a meeting, pitching again and again despite my speech being painful and difficult.

The funny part for me was of course that laryngitis is no worse than what I deal with everyday with chronic pain. From my perspective, why would I let a stuffy nose and red throat keep me from working? Does my interstitial cystitis keep me from working? Do my migraines, back pain and chronic fatigue? No. Laryngitis is a walk in the park. If my bladder isn’t flaring and I don’t have a migraine, laryngitis is an easy day. And yet I received more sympathy than I have in a long time.

So do I prefer the visible or invisible ailments? While choosing between the two is like choosing between a rock and a hard place, they each have their own unique pros and cons. Being able to hide my pain is convenient when I want to put on a happy face and direct attention to something other than my complicated health situation. However, getting a little extra leeway from an outwardly visible affliction is also helpful at times. I think in the end, I am satisfied that most people forget about my illness or fail to notice it most of the time, but it’s also nice for them to be generally informed so I can ask for a little extra consideration when I truly need it. So in a way, I am not unhappy with my position.

What are the unique implications of your health at work? Here are some suggestions for dealing with invisible illness in the workplace. 

Why I Only Pursue Work I’m Obsessed With

Startup founders are well known for being obsessive with their work. It takes a lot of passion and emotional energy to work towards something everyday when you are told that 80-90% of your peer group will inevitably fail. This presents a unique challenge and tends to attract those that are comfortable with adversity and risk. As I’ve discussed in a previous blog post, the disabled definitely fall into that category of “comfortable with adversity.” This comfort doesn’t come by choice necessarily, but rather through years of conditioning of working hard under often bleak circumstances. Working your ass off despite ill health is easily transferrable to working your ass off despite the overwhelming odds against you as a fledgling startup.  

“Working your ass off despite ill health is easily transferrable to working your ass off despite the overwhelming odds against you as a fledgling startup.”  

Aside from my burning passion, there’s another, more practical, reason that I only work on projects I’m obsessed with. I simply don’t have the energy or expendable bodily health to work on something that I don’t feel strongly about. It turns out this is a pretty good filter for picking ideas that I’ll be able to stick with for the long haul. A startup takes perseverance, and perseverance requires passion. It’s just simply not worth the pain if the project doesn’t resonate with me deeply.

More than the practical limitations, obsession actually expands what I am capable of in a way that is perhaps counterintuitive to the abled. As a disabled person, when I’m obsessed with a project, I am able to do more than when I am not. It literally pushes me to achieve beyond what my body would otherwise let me get away with. It makes me more able. Obsession gives me energy and enthusiasm and a spark to keep going despite literal, physical, unrelenting pain. If someone is willing to push forward despite these circumstances, all I can say is that you better get on the bandwagon or get out of their way. The disabled on a mission are a force to be reckoned with. We didn’t drag our pained sorry bodies out of bed to come home defeated. If we were going to be defeated, we could have, and would have, just stayed in bed to begin with.

“If someone is willing to push forward despite these circumstances, all I can say is that you better get on the bandwagon or get out of their way.”

I shouldn’t have to explain that this quality is quite the physical embodiment of the “come hell or high water” mentality absolutely required of a startup and of its leader. This is why I believe strongly that the disabled are an unrecognized source of talent and passion among various sources of startup funding, as discussed here. Want someone that will succeed no matter what odds stand against them? Invest in someone who has demonstrated their willingness to push forward everyday despite circumstances you probably can’t even imagine as an abled investor. Invest in the chronically ill and chronically impassioned.

We Need More Funding For Disabled Led Startups

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As a startup co-founder and CEO, fund raising is a major part of my job. I attend seminars and panels, I talk to startup mentors and experts, and I apply for funding from a variety of sources. There’s one thing about this process that I have noticed. You often hear about funding opportunities for certain special interest groups. Women led startups, minority led startups, startups led by service disabled veterans. Those are all wonderful groups to be lifting up. There is one group, however, that seems to me to be woefully under-represented. The non-military disabled.

I’ve been to a lot of funding workshops, and I have never once heard mention of a fund, or a program, or even a hat tip to disabled led startups. This is very concerning to me for a few reasons. For one, this is a group that does in fact need the help. The disabled are disadvantaged in a lot of ways, and a little encouragement and aid, financial or otherwise, goes a hell of a long way.

Secondly, entrepreneurship is particularly empowering for the disabled. A flexible self driven career where I can set my own limits and control my own schedule? Sign me up! Entrepreneurship should be fostered among this community that is uncommonly poised to take advantage of the upsides of being your own boss. As I have discussed in a previous blog post, the flexibility of schedule that comes along with entrepreneurship is particularly beneficial to those who need a little extra leeway to define their own schedule and plan their own day.

Thirdly, and perhaps most importantly to potential funders, is the unique perspective that the disabled bring to their work, as discussed here in a previous post. For me at least, my severe chronic pain has taught me to be comfortable with adversity. I know how to rise up to a challenge because I do so everyday that I face the world with my disability. This is particularly useful for entrepreneurship, a career that is uncommonly challenging and that requires extreme perseverance. If there’s one thing my disability has taught me, it’s how to keep moving forward despite some pretty daunting obstacles. The uphill battle is my wheelhouse. This ability translates well into the startup world.  

What can we do to address this problem of limited resources for the disabled? Awareness of course is a good place to start. The disabled exist! It’s very easy for us to be pushed to the sidelines, but we are here, and we want and need to be involved. Not only that, but we have many unique skills and perspectives to offer.

Related to but separate from the issue of awareness is the problem of stigma. Often the disabled, and especially the invisibly disabled, hide their disabilities due to the fear of judgement and unconscious bias. We fear that revealing our disability will actually hurt our chances of receiving funding. This is something that I myself had to consider before even starting this blog. Will funders doubt our ability to deliver because of our illnesses? We do not ask for the support that we deserve, and have often earned, because we are afraid of being perceived as needing help. This stigma leads to concealment of our illnesses, and the obfuscation of our true selves leads to it’s own set of problems.

I’d like to challenge funding agencies to step outside their box and to consider funding a disabled led company. Not just for social good, but also for the good of your investment portfolio. Studies have shown that increased diversity leads to increased success. It’s not just kind to spread the love (and the money) – it’s also smart.

Why I Used to Conceal My Disability… and Why I Don’t Anymore

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Image from Interstitial Cystitis Association

I’ve always been disabled, though I did not accept this title until relatively recently in my adulthood. I come from a chronic pain family and have had chronic pain since early childhood. It didn’t dawn on me until about junior high that not everyone felt the unrelenting, severe physical pain that I did – including migraines, back, muscle, joint and nerve pain. To me it was just normal, especially considering that many in my family are the same way.

I realized that I was different around the sixth grade, when it became clear that most kids didn’t carry around ibuprofen with them everywhere they went like I did. In the 7th grade I had to start wearing a back brace for scoliosis and kyphosis – painful conditions of the spine. At that point it was hard to ignore that I was not the same as my healthier peers. This is when I first remember starting to make efforts at concealing my disability. My siblings and I pulled out of public school to homeschool that year. I attended class a couple times a week during my homeschooling years, and would remove my brace for an hour or so at a time to attend class, then put it back on as soon as I got in the car.  The majority of my peers never knew about my brace, with only my close friends being privy to the information.

My medical problems only got worse and more numerous as I got older. The migraines got extreme in college, ultimately culminating into a constant severe headache that was with me from the time I woke until I went to sleep everyday for months at a time with no signs of abating. During this time I double majored in chemistry and biology at a very challenging technical school. This is where the concealment really took off. I never told my professors I was sick. A few classmates knew, but I feared that my professors would think I was asking for special treatment, and that was the last thing I wanted. So I kept my considerable pain to myself, despite the fact that I could have taken advantage of resources at the school. Despite this challenge, I earned Magna Cum Laude with a technical double major in 4 years.

In grad school it got worse. By then I had developed interstitial cystitis, a cruelly painful autoimmune disease of the bladder. Again, I hid this as well as I could, this time for more obvious reasons. What woman wants to tell her male supervisor that her bladder is on fire, her entire urinary tract crawling with what can only be described as medieval torture pain? I certainly didn’t want to. So the concealment of this along with my other ongoing medical problems continued. Again, my close friends knew, but my professional community as a whole was kept in the dark as much as possible for the same reasons as in undergrad; I didn’t want to ask for special treatment. I wanted to be seen as normal.

If you’ve guessed that this is unsustainable, you’re right. A bladder flare would hit me, and I would have to leave work unexpectedly to spend the rest of my day running back and forth to the toilet. I would come in to work late after being up all night in pain. Maybe things would have gone better if I had advertised myself as what I really was – disabled – and received the reasonable accommodations that I needed and was entitled to. All I really needed was some leniency when medical disaster occasionally struck. An hour off early here and there. What I’ve learned from that experience is this: if you don’t ask for accommodation, you will never receive it. People don’t understand what they have not been exposed to. And even if you tell them, they forget and need to be reminded periodically. Certainly in the case of invisible illness your problems are out of sight, out of mind as far as your managers are concerned.

My experience in traditional workplaces taught me one thing – if I am to succeed in the world as a professional, I must embrace and be honest about who I am. Sometimes I need to take a break, Sometimes I need to go home an hour early. And that needs to be ok. I left one career and decided to pursue entrepreneurship. Today I am a startup CEO. I work hard and I rest hard. I’m on the clock more than 8 hours a day working, but I make time to take care of myself when I need to. To take a nap, to take a bath, to take a moment to relieve my pain. In the end, all I needed was the flexibility to take care of my own body.

In my startup I manage my own schedule. If I need to take a pill and lay down for an hour in the middle of the day, I do. If I need to schedule meetings around doctor’s appointments, I can. I don’t have a boss wondering where I am. I can work from home in my pajamas with a hot pad between my legs on a bad bladder day. I can go to the gym in the middle of the day to relieve my muscle pain. This flexibility allows me to work many more than 40 hours a week while also taking care of my health. All it required was a few changes – a militant redesign of my life around my health, honesty with myself and others about my condition, and even a little forgiveness granted to myself when I need to ask for some extra help.

This is why I used to conceal my disability… and why I don’t anymore.

Read more here on why and how to tell your employer that you have a chronic condition such as interstital cystitis.

Enabled by Disability as a Startup CEO

My name is Amy Eskridge Pettigrew. I am the CEO of a technology startup and have also been disabled by severe chronic pain my entire life. What is this like? I am much like other startup CEOs, but with my own particular nuance. Today is the start of a blog recording this journey.

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For years, especially during undergraduate and graduate school, I hid my disability. With invisible illness, hiding is easy. The fear of judgement made me conceal my struggles. My worst nightmare was that I would be perceived to be asking for special treatment. Above all, I wanted to be like everyone else. To appear healthy, and to be healthy. That mindset was wrong.

In my adulthood, I have finally accepted my disability. I am capable of the same things that other CEOs are capable of, with some adjustments to make my work day more comfortable. But I am not just capable of the same things – I am in fact capable of more. My disability is an ability. Let me explain.

When you have a disability, everything and everyday is a little bit harder. Sometimes a lot harder. But with this condition, I have many unique experiences that have made me who I am. I have character traits that are won only by a lifetime of struggle. When the adversary is your own body, you are undergoing a constant trial by fire. You are hardened. You become accustomed to challenging situations. Adversity becomes second nature.

I know that life is hard. I have lived it and conquered it every day. Every hour. Every minute. This may sound exhausting. It is. But so is life. And so is running a startup. Is this discouraging? No. For me, it is normal. Adversity is part of my daily experience.

The popular statistic you always hear is that 90% of startups fail. Why is this? There are certainly many reasons for this fact. Success isn’t just having a good idea. It’s the team, the execution, the product market fit, the market conditions and countless other factors. I would also postulate that many would-be entrepreneurs are not prepared for how difficult the journey will be. They start out naive. They get in over their heads. Many struggle, fail and give up.

I would argue that my disability sets me apart in one particular manner. I don’t assume anything is going to be easy. With a disability, everything is hard – startups are no different and perhaps especially so. But I am not afraid of a challenge. My whole life has been training for this. I am uncommonly well prepared for a difficult fight. Uncommonly prepared for the long haul. After all, my disability is with me for life. I can persevere for as long as I need to. I know how. I’ve seen the way. I’ve done it before. I do it every day.

I thrive on challenge. Overcoming challenge is perhaps the only way that I know how to live. Life on easy mode is out of the question. If my day is going to be hard no matter what due to my disability, I might as well pursue something worth the struggle. Something worth the effort of overcoming the pain. That probably sounds melodramatic to the abled. But like I said, disability gives you a unique perspective. I am determined to live a life worth living, and to have a career worth pursuing and, ultimately, to build a company worth building.  

I am no longer ashamed of my pain. I am proud of it. It makes me who I am. Yes, it is a double edged sword. It hinders me, but it also makes me stronger. The determination to overcome propels me through my day. My unwillingness to quit despite the pain feeds into my unwillingness to give up on my business despite the unique obstacles of that particular pursuit.

What can I say besides this: Bring it on. After all… I’m prepared for a challenge.