Sometimes in life, you’re dealt a card that isn’t what you would have necessarily chosen yourself. And sometimes it’s simply out of your control. However, oftentimes all it takes is a positive attitude, acceptance of the situation, and you can still live your very best life despite the circumstances. Of course, that may be easier said than done, but it’s absolutely possible.
Thirty-year-old Ashley Seippel, Owner of Ashley Nicole Style, knows this first hand. At only eight years old, she was diagnosed with a form of Arthritis. She’s experienced physical pain some can’t even imagine, and it’s something she deals with every single day of her life. But guess what? She didn’t let this stop her. In fact, her diagnosis has caused her to look at life in a way we should all be doing so. She firmly believes in living this one life we have to the very fullest, simply by taking it one day at a time.
Ashley owns a fashion, styling, and wardrobe consulting business, which she started three years ago when she moved to Houston. Soon after her move, she launched her lifestyle, travel, and fashion blog, also under the name Ashley Nicole Style. She’s a busy gal who is so extremely inspiring. Her hardships didn’t define her; they made her thrive. And today the latest issue of Arthritis Today comes out, and guess who is on the cover? Yep, Ashley Seippel. Pretty amazing, right?
Alright, let’s get to this interview, shall we? You’re going to love it.
First off, congrats on being the cover girl of Arthritis Today! What an honor. You must be so excited. I’d love for you to tell us a little bit about your background/when you were first diagnosed, how you’re currently doing, and so on. Basically, tell us your story!
Thank you! I genuinely am still wrapping my head around it! I am truly thrilled and honored to be on the national publication produced by the Arthritis Foundation – Arthritis Today. It is so mind blowing to be recognized not only for my involvement, but to be able to advocate for all the arthritis sufferers out there, and to get the opportunity to share my story.
I was first diagnosed with Juvenile Idiopathic Arthritis (JIA) when I was eight years old growing up in Vail, CO. Originally the pain started in my right hand, and they thought it was just a cyst. Once the cyst was removed the pain continued. At that point, our primary care physician put us in touch with a rheumatologist in Denver. After the diagnosis, I had to start taking several pills every day, sitting out in PE class if I wasn’t feeling up to it, and actually had to switch from skiing to snowboarding, because it became difficult for me to hold the poles. Ha the burden of living in a town that’s a ski resort!
I also would go bi-yearly to see my doctor, get checked up, have my blood drawn and get x-rays. I started collecting little porcelain figurines the first day I went to the doctor, on every subsequent visit, and then on my last visit. The last visit was when I went into remission, and I got the biggest of all the figurines, and to this day, they are one of my prized possessions, and something that made a challenging experience as a child a little positive and encouraging.
From there, I went on to attend a prep school and went back to living a completely healthy, normal life. I played volleyball and was on the tennis team in high school. I experienced no pain whatsoever. To my dismay, my parents wouldn’t let me go straight from high school to fashion school, which is where I always knew my heart belonged. They wanted me to have a well-rounded education to fall back on, in case my love and desire to be in the fashion field fizzled.
I attended the University of Colorado – Boulder, where I got my bachelors in Sociology, emphasizing in Criminology. Then I was off to San Francisco where I attended the Fashion Institute of Design and Merchandising, where I majored in Visual Communications. I worked in both retail, and as an assistant buyer to a local designer there – both rewarding, but I knew styling and personal shopping were what I really wanted to do. I started helping some friends and family here and there on the side, but never really expected to be able to make a career out of it.
I got an invitation to attend a fashion show hosted by the Bay Area Arthritis Foundation, and until that point, I should say I genuinely had forgotten about suffering as a child. I think the statement is true, that unless you’re directly affected by something, you prefer to stay ignorant of it. I attended the fashion show with my sister, and all the old emotions came to the forefront and I knew I wanted to get involved to help children like me who were suffering. I joined the committee there, and was active on their auxiliary board, as well as with yearly events.
It was in 2013 that I came face-to-face with arthritis again. A close family friend passed away in January, and I started getting really bad pain in my legs and my back. My body was exploding with pain when I was doing the simplest things, like just walking down the street. I chalked it up to stress, took Advil, and figured it would go away. Later that year, in April, my grandfather who I was incredibly close to, passed away. At that point I was having trouble sitting or standing, I could barely dress myself, and my flexibility became more limited. I was in agonizing pain at his funeral, and found it next to impossible to get through. I knew the pain I was feeling now no longer could be chalked up to stress, and knew the pain all too well from the past.
As soon as it was over, I contacted the Arthritis Foundation in San Francisco, who I had become friends with, and asked for a referral to a rheumatologist. He quickly diagnosed me with Ankylosing Spondylitis (AS), which is a form of arthritis that primarily affects your hips, low back and spine. I had no idea that even if you went into remission, as I had as a teenager, that the disease never left your body; it just laid dormant. I started taking a biologic, which is an injection you give yourself every other week. The biologic helped manage the pain and I could somewhat resume my normal lifestyle.
Wow. Having been diagnosed with Juvenile Arthritis at the very young age of 8 is a lot for a little kid to take on, I imagine. How did you push through and still enjoy those years of your childhood just as much as the next kid?
Kids are resilient and always living in the ‘here and now.’ I was no different, and don’t really feel like it fazed me. I also attended a very small private school (my class had about 25 people total) so there wasn’t much that anyone didn’t know. The other kids were always really understanding, and I never felt different from them, even if I would be sitting out during gym, or not skiing with everyone else.
When I really noticed feeling a “difference,” if you will, was as an adult. Shortly after my diagnosis, it hit me that “ok, this isn’t going away, this is what my life is going to be like.” What they don’t tell you is that fatigue, anxiety, depression and weight gain are typical side effects of arthritis. I have not experienced the latter two, but the fatigue and anxiety I most definitely have.
Having arthritis can be extremely isolating, and a challenge to share with others, because they don’t understand what they cannot see. It isn’t like I have a broken leg to explain why I’m in pain, but instead have my body fighting against itself everyday – some days the pain is truly unbearable and makes me nauseous.
You also start to feel like a burden. No matter how strong your support group is, you hate to be the person that’s always being asked how they’re doing, or the person complaining or needing to cancel plans.
It is also a harsh reality knowing that you must rely on medication to feel good and get you through the day. At the beginning of my diagnosis that was one of the things I resented most. Now I have come to terms with it. My medication gets me through the day and keeps me healthy, so I’ve come to embrace it.
What does a typical day in your life look like? Does your arthritis affect you every single day or are there some days you have no pain at all?
As a business owner, I am lucky that I can create my own schedule. It truly is a blessing. For example, earlier this week I was having a terrible flare up and needed to clear my whole day and just rest.
In general, I have to limit my days and weeks to only so many appointments, projects, blog posts, clients and happy hours/dinners. As I mentioned I used to be go, go, go and literally could do 20 things in a day, and then go out to dinner. Now, I limit myself to five tangible things I can get done. By that I mean, if I know something is going to take longer, then I have to do one less thing that day. That’s a large part of the new normal I had to create after I was re diagnosed.
I always wanted to be an entrepreneur and work for myself, ever since a young age. My dad started and owned his own company and thrived, and I wanted to follow in those footsteps. Although I do acknowledge that having a typical 9-5 job would be next to impossible for me since I hurt if I sit or stand for too long.
On any given day, I have pain. It can be as low as a 2 or as high as a 10 (on a 10-point scale), which makes having a strict daily schedule a bit challenging.
People, of course, don’t know you have arthritis just from looking at you – is that harder or easier for you? Do you open up to most people about it or you really try to keep it to yourself/family/close friends?
When I was first re-diagnosed as an adult in 2013, I think I was in denial. I thought I can fight against this, and it’s no one’s business what is going on with me personally – I fight my own battles. That mentality eventually went out the window.
When I moved to Houston shortly after my diagnosis in 2013 with my fiancé Adam, I knew no one, so I turned to the Arthritis Foundation for support in finding a new doctor, but also to try to create a network and find friends. I had been involved in San Francisco, as I mentioned, but I truly threw myself into the foundation here. I think I was a breath of fresh air for them, and perhaps my attitude towards the disease, and my young age, was something they hadn’t seen before.
I participated in the Walk to Cure Arthritis, and shortly thereafter joined the Bone Bash committee (their annual Halloween gala). I helped on that for two years before they asked me to be the Adult Honoree at it this past year. An honoree is someone who is instrumental in educating people about arthritis, involved in the community, and vocal about the fact that it isn’t just an “old person’s disease.” I was truly touched when I received this award, and knew in the months leading up to the big party, that I was going to be expected to open up and share my story. That’s when I realized, just like I always have with everything else in my life, that I was going to take the bull by the horns and make it my mission to be as candid as possible.
I opened up all about my arthritic journey on my blog, and received really touching responses. I’d advocate and tell anyone I met about my arthritis, as it’s a huge part of my life, and I also showed my emotions. It’s not like I was cool and collected before, but I really opened up about the challenges, both physically and mentally, which really helped me come to terms with my disease.
Of course I still get reactions here and there of people being mind-blown because I don’t look like I have arthritis. Well, that’s because I am polished and put together when you see me! You don’t see me at home when I’m feeling bad and in my bathrobe. That being said, as a fashion lover, I have always taken pride in dressing well – it literally is a passion of mine. In some way, I look at it now as a suit of armor – if I’m feeling bad but still have to meet a client, it lifts my spirits and lessens the pain, if only temporarily.
I feel like I’ve said it too many times, but you only have one life to live, and I won’t let arthritis define mine. I’m going to throw on that coat of mascara and pink lipstick and try my best to be my best, even if it means taking it day by day.
You’re so inspiring, Ashley!! Ok, so you are a business owner and blogger, constantly working with clients and brands – how have you been able to manage it all? You always look so polished and happy in your photos and you’re so busy! I’d love for you to talk about what challenges, if any, you’ve faced due to your arthritis with your business/blog and how you have worked through them.
I have to be upfront with my clients when I first start working with them. They need to understand my arthritis and its limitations, as well as its unpredictability. If I have a client scheduled but am having a massive flare up, I am going to need to reschedule. That has been one of the biggest challenges for me to deal with because I take my job and commitments very seriously, and having to give that up sometimes to put my health first has been an adjustment.
The same thing goes for brands I work with on my blog (if it’s appropriate). Occasionally I’ll have deadlines I cannot meet, or a post that is delayed because I haven’t been feeling well. I am upfront and will let them know, and knock on wood, have never received a negative response. I have gotten close with several PR reps with companies I work consistently with, and not only have we formed friendships, but they are so supportive and will donate to the Arthritis Foundation, or do something in my name. I cannot tell you how touching that has been.
You are SUCH a positive person and it’s truly inspirational. What advice would you give someone who might be going through a harder time or a diagnosis of sorts?
Keep your chin up. There’s always light at the end of the tunnel. I have had my fair share of cries, and still do. Whether it’s about the pain, or asking myself ‘why me’ – it is hard not to get discouraged from time to time. What I try to remind myself is it could always be worse.
I have a wonderful supportive circle of friends and family, I have a roof over my head, food on the table, and so many luxuries afforded to me. My arthritic condition is also under control, and I am able to conquer my daily life with the help of lots of sleep, hot baths every night, weekly massages, and only doing what I know I am capable of. Meaning, do what you can to make you love yourself.
For instance, start a new hobby, throw yourself into your work or look for a new job, join a support group, get active or get involved, like I did with the Arthritis Foundation to meet more people who can relate to you. It is always tricky, but especially when it comes to illness, you must put yourself first – everything else can wait.
What inspires you?
The world inspires me. I’ve had the opportunity to travel a lot, and am always influenced by the places I go and the people I meet. It also reminds you of all that you have, and should be grateful for. My family inspires me, as well. I continue to be inspired by my father who was the most hardworking, philanthropic, and funniest person I know. I try to make him proud every day. I am inspired by my mother’s resilience, strength and desire to never stop learning. I am inspired by my sister who is relentlessly supportive, so intelligent, and the most loving, caring person I know. And by Adam, my fiancé, who’s shown me what true love and commitment is, and who has taught me to live in the moment, embrace change, and knows better than anyone the ups and downs of my arthritis and loves me just the same. Having a great network of hard working and entrepreneurial friends (like yourself!) inspire me to push the boundaries and to remind myself that no dream is ever too big.
What motto/quote do you always try to live by?
“If God brings you to it, he’ll get you through it.” I’ve never considered myself a very religious person, but have always wholeheartedly believed that there is a higher power controlling everything. This quote was sent to me by one of my best friends when my father passed away in 2001. I was only 14, and to say it was traumatic would be putting it lightly – anyone knows what I mean who has lost a loved one. The message in that quote has been one that I’ve carried with me ever since.
I believe that everything happens for a reason, even if we don’t know why at the time. When I first moved to Houston, I was so lonely and hated it here, and now I love it. I know I was meant to move here to form true, honest friendships, start my own business, challenge myself in living somewhere I never thought I would, and to become an arthritis advocate and to come to terms with my own resentment towards the disease, and embrace it. Life isn’t perfect, but isn’t that what helps define us? How we chose to handle hardships or achievements molds us into the people we are today, and hopefully helps us create a better tomorrow.
How can people get involved if they’d like to support finding a cure for arthritis?
They can visit the Arthritis Foundation’s website here, where they can learn more about arthritis, living with arthritis and opportunities to get involved. They can get involved locally and join me in the fight against arthritis at the Walk for the Cure on May 20th (join my team here). They can also reach out to me directly if they’d like with any questions or comments – I promise, I’m an open book.
Some of Ashley’s favorite things…
As I mentioned, I take nightly baths, and these are some of the things I cannot live without. Whether you’ve had a bad day, need to de-stress, or just want to enjoy a luxurious bath I recommend diptyque Baies Scented Candles, and L’Occitane Bubble Bath. For your skin, the Caudalie Purifying Mask is the best. When I get out of my bath, I use Aveda Lavender Oil. It’s calming and is great for your skin – you’ll be ready to go fast asleep. I cuddle up in my Barefoot Dream Bathrobe and Barefoot Dreams Blanket. They’re a bit of a splurge, but feel divine, and the quality is great.
In terms of resources for Arthritis, Arthritis Today and the Arthritis Foundation website have been my go-to’s for any questions I have about the disease or support I may need. Besides that, I read New Morning Mercies daily to help reset me, uplift me when I’m not feeling well, or just to remind myself that it’s never too late to gain a new perspective on how to handle a situation. Also, I just bought Clean Gut, which was highly recommended by my doctor. It’s all about getting to the root cause of what’s triggering your disease and how to reverse it by what you eat and put into your body. I’m hopeful it will have some great tips I can implement into my life.
Thank you SO much, Ashley!
See past interviews here.