Advertising

11 Things To Remember If You Love A Person With Albinism

Advertising
11 Things To Remember If You Love A Person With Albinism

Mashawna Thompson’s daughter, Lyra, came into the world with usually pale skin and a full head of nearly-transparent hair.  By all measures, she was beautiful.  But then Mashawna experienced that moment that all new parents feared–the doctors suspected that something was “wrong.” Ultimately, baby Lyra was diagnosed with albinism.

Many people are unfamiliar with the term “albinism,” but nearly everyone has heard of “albinos.” And that is only the tip of the iceberg of misunderstandings.

While Lyra, who is now a thriving 9-year-old, has some physical challenges due to her condition — she has poor eyesight, light sensitivity, and sensitive skin — the greatest obstacle that this family has faced has been the plethora of misunderstandings that people have about albinism.

According to Mashawna, who blogs at Parent of a Child With Albinism, “It really bothers me when people just stare, which happens A LOT. Fortunately, most of the time Lyra can’t see well enough to see them staring at her, so it doesn’t bother her as much. I would much rather people ASK about it than just stare.”

She even had a t-shirt made for Lyra that says “I was born with it” on the front and “Yes, it’s real” on the back. “By far, the most common question we hear is ‘Is that her real hair color?’ ” explains Mashawna.

In addition to stares and questions about Lyra’s hair color, Mashawna has observed the negative stereotypes in the media and the dehumanizing connotations associated with the term “albino.” Mashawna says that, “On a few occasions, other kids have called Lyra a vampire or said ‘Are you a vampire?'”

Advertising

Recently, Judy Silny wrote an article about the unique challenges faced by people who have ADD.  She emphasized that understanding a person’s challenges can help you to be more patient, compassionate, and tolerant.

Unfortunately, Mashawna’s family’s experiences are common, and albinism is at least as misunderstood as ADD, and loving a person with this condition does require you to understand the challenges that they face due to their albinism. Here are some things to remember if you love a person with albinism:

1.  They wish that you would be careful about using the term “albino.”

According to an informational bulletin published by the National Organization for Albinism and Hypopigmentation  (NOAH), the use of the term “albino” is offensive to some people with albanism.  Referring to these people as “albino” increases separation and stigmatization.

When you refer to them as “people with albinism,” that empahsizes the fact that they are people first and that their condition does not define them.  According to Mashawna, “I don’t like hearing ‘Is she albino?’ But it doesn’t bother me as much as it used to. I understand that this is the term that most people are familiar with, but the word has so often been used in an inaccurate and/or insulting way by society and in media, that we prefer not to use it.”

But you also should not automatically dismiss this term.  According to an article on Vis-Ability Stories, many people with albinism are embracing the word “albino” as a source of pride and identity. So follow your loved one’s cues, and refer to their condition in the way that they are most comfortable.

2.  They want you to know that albinism is not necessarily a disability.

According to NOAH, albinism is not considered a disability under the Americans with Disabilities Act, because it does not always cause significant limitations in the activities of people who have it.  While some people with albinism do have disabilities, such as visual impairment, albinism itself is not considered to be a disability.

Advertising

3.  They do, however, have many experiences similar to those who have disabilities.

NOAH states that people with albinism are a unique group and often do feel isolated from people who do not have albinism. Albinism is a part of their identity, and they are often met with prejudice and misunderstanding about their condition. People with albinism have many of the same social challenges as people with disabilities.

4.  They want you to know that people of all races can have albinism.

Albinism does not only affect families with light skin, according to NOAH.  This condition can be especially challenging for African-Americans and people who belong to darker-skinned races. Albinism can cause these people to experience difficulty with their racial identities and lead to struggles to “fit in” with other people of their culture.

5.  They also want you to realize that albinism is not an illness.

According to Every Child Ministries (ECM), albinism is not a sickness or a disease. It is a genetic condition inherited from both parents, even if the parents do not have albinism. Take care to treat a loved one with albinism as if they are healthy–because they are!

6.  They can lead “normal” lives.

ECM states that people with albinism can expect to have a normal lifespan and lead lives without any limitations due to their condition. They do not have any type of mental impairment, and they can expect to achieve the same goals as their peers who do not have albinism.

7.  They often have eyes that are sensitive to light.

Wearing sunglasses is a must. People with albinism have light-sensitive eyes that can feel a painful, burning sensation in the sun, according to ECM. They need to take extra precautions in order to protect their eyes. Mashawna states, “Sunglasses AND a hat are a must! Also sometimes even indoor lights can be a problem especially florescent lighting. They put shades over the light fixtures in Lyra’s school classrooms.  Also, overall visual acuity is impacted by the amount of light.”

8.  They also have sensitive skin.

According to ECM, people with albinism have skin that burns easily in the sun, and they often get sores on their skin and lips, due to its sensitivity. There is also an increased risk of skin cancer in people with albinism.  Staying out of the sun during the hottest times of the day, and wearing sunblock and protective clothing can help minimize skin issues.

Advertising

According to Mashawna, “…one advantage specific to albinism that I can think of would be that it forced everyone in our family to pay better attention to and stress the importance of sun protection.”

9.  They want you to know that there are different types of albinism.

According to Kids’ Health, different people are affected differently by albinism. Some people have pale skin and hair, while others only have eyes that are affected. The eyes of a person with albinism may be red or pink, or they may be brown or blue.  Some people with albinism have visual impairment, while others do not. It is important to realize that if you know one person with albinism, you know one person with albinism.

10.  They may have visual impairments.

The visual impairments that people experience with albinism can vary. Kids Health states that many people with albinism are near-sighted, far-sighted or have other visual impairments.

Some visual problems can be corrected with glasses or contacts, some require surgery, and some can not be corrected at all.

It is important to realize that a lot of people with albinism try to hide their visual impairments, because they want to fit in with everyone else.

This has been the greatest challenge that Lyra has faced.  She has poor depth perception and difficulty reading social cues, due to her limited vision.

Advertising

According to Mashawna, “Lyra is pretty smart and quick to memorize her environment so she can be a pretty good ‘faker’ especially in familiar places…But then those moments when she DOES struggle visually, tripping on a step, getting too close to a person when talking or holding a book an inch away from her face, if to people who don’t know she has low vision, she just looks weird.”

11.  They want you to know that some types of albinism are associated with more severe health issues.

According to the American Association for Pediatric Ophthalmology and Strabismus, two rare forms of albinism are associated with other health issues.  People with Hermansky-Pudlak Syndrome (HPS) often have more bleeding and bruising, as well as bowel and lung disease in some cases. Chédiak-Higashi syndrome causes increased risk of infections, anemia, and enlarged liver.

Learning about your loved one’s albinism can help both of you to face this challenge together.  Mashawna states that, ” ​I think one advantage of having a child with albinism would be the way it changes you.  It has forced us to have more patience overall. It has given us more awareness and tolerance for people with differences or disabilities.  It’s taught us to be more compassionate.”

As you grow in your understanding of your loved one with albinism, you may be surprised by the ignorance and misconceptions that people have about this condition.  Perhaps the best way to support your loved one is to spread the word and correct the misinformation that you hear. Spreading understanding is spreading love!

To help spread understanding, you may want to start by sharing this video that Mashawna created.

Perception is Not Reality

Advertising

Featured photo credit: Mashawna Thompson, http://parentofachildwithalbinism.com via parentofachildwithalbinism.com

More by this author

From Kids To The Elderly: Wisdom On How To Live Your Own Life 9 Signs That You Are Actually A Shy Extrovert 9 Bad Things Happen When You’re Too Nice A Little Of Both? 12 Signs You May Be An Ambivert! 10 Life Lessons For Highly Sensitive People

Trending in Communication

1 21 Best Tips On Making A Long Distance Relationship Work 2 How to Deal With Anger (The Ultimate Anger Management Guide) 3 Why Your Lover Doesn’t Want Your Advice, but Your Validation 4 How to Find Happiness in Your Everyday Life 5 5 Tips for Self-Care During the Holidays

Read Next

Advertising
Advertising

Last Updated on January 24, 2022

21 Best Tips On Making A Long Distance Relationship Work

Advertising
21 Best Tips On Making A Long Distance Relationship Work

Having texting and video conferencing at our fingertips, it appears that maintaining a long-distance relationship is easier than ever. Long-distance calls are no longer a luxury; the days when they needed to be rationed are long gone.

Long-distance couples do not have to depend on 3 p.m. postal delivery, waiting for news that is at best four days old.

Now we’re no longer even in the days of waiting for our loved ones to check their e-mail when they get home from work. Instant messaging keeps us hooked to each other even when we are out shopping, working, playing, watching a movie and doing much more.

Technology, however, cannot compensate for everything in a long-distance relationship, as anyone with a long-distance relationship will tell you.

Many long-distance relationships still seem emotionally difficult despite the lack of regular physical proximity.

People often think long-distance relationships will never work. It may be discouraged by your family, and some of your best friends may tell you not to take it too seriously in case you end up heartbroken.

Many things are not possible due to the extra distance – no one can promise it will be easy. Things could get complicated, and you might feel lonely and sad at times.

Still, many of us try them.

Video Summary

However, the extra distance also makes the simplest things the sweetest. Being able to hold the other person’s hand, eating together at the same table, feeling each other’s touch, taking a walk together, smelling each other’s hair… these small wishes could suddenly mean so much more in a long-distance relationship.

Long-distance relationships may be tough, but they have their own surprises too.

Here’re 21 tips on how to make a long distance relationship work:

1. Avoid excessive communication.

It is unwise to be overly “sticky” and possessive. You two don’t really have to communicate 12 hours a day to keep the relationship going. Many couples think that they need to compensate for the distance by doing more. This is not true. And it might only make things worse. Soon you would get tired of “loving.”

Remember: Less is more. It is not about spamming — you are only going to exhaust yourselves. It’s really about teasing at the right moments and tugging at the right spots.

Advertising

2. See it as an opportunity.

“If you want to live together, you first need to learn how to live apart.” – Anonymous

View it as a learning journey for both of you. This is an opportunity for you to prove your love for one another. According to a Chinese proverb, “Real gold is not afraid of the test of fire.” Instead of thinking that this long-distance relationship is pulling you two apart, you should believe that through this experience, the both of you will be bound together even stronger.

As Emma says it to Will in season four of Glee,

“I would rather be here, far from you, but feeling really close, rather than close to you but feeling really far away.” – Emma, Glee Season 4

3. Set some ground rules to manage your expectations.

Both of you need to be clear with what you expect of each other during this long-distance relationship. Set some ground rules so that none of you will do things that will take the other party by surprise.

For instance, are you two exclusive? Is it all right for the other person to go on dates? What is your commitment level? It’s better to be open with each other about all these things.

4. Try to communicate regularly, and creatively.

Greet each other “good morning” and “good night” every day — this is a must. On top of that, try to update your partner on your life and its happenings, however mundane some of the things may seem.

To up the game, send each other pictures, audio clips, and short videos from time to time. By putting in this kind of effort, you make the other person feel loved and attended to.

5. Talk dirty with each other.

Sexual tension is undoubtedly one of the most important things between couples. In a way, sexual desire is like the glue that keeps both parties from drifting apart. Sexual need is not only biological but also emotional.

Keep the flames burning by sending each other teasing texts filled with sexual innuendos and provocative descriptions. Sexy puns work pretty well too.

6. Avoid “dangerous” situations.

If you already know that going to the club or going drinking with your group of friends late at night will displease your partner, then you should either 1. Not do it or 2. Tell your partner beforehand to reassure them.

You should not let this sort of thing slip by because it will only make your partner extra worried or suspicious – and of course, very upset because they will feel powerless or lack control over the situation.

Advertising

You can fall victim to your traps by going out with eye candy from work after work or dating someone from your past who has been flirting with you without realizing it. Before entering a dangerous situation, you need to recognize the dangers.

Listen to your heart, but don’t just rely on it. Make sure you also listen to your mind.

7. Do things together.

Play a game online together. Watch a documentary at the same time on YouTube or Vimeo. Share a song on Skype while another plays the guitar. Video-call each other and go for a walk together. Together, go online shopping – and buy each other gifts (see #13).

You really have to be creative and spontaneous about it.

8. Do similar things.

Recommend books, TV shows, movies, music, news and etc., to each other. When you read, watch and listen to the same things, you get to have more topics in common to talk about.

Even if you live apart, it’s nice to have some shared experiences.

9. Make visits to each other.

Every long-distance relationship is enriched by visits.

After all the waiting and yearning and abstinence, you finally get to meet each other to fulfil all the little things like kissing, holding hands, etc. These are typical for couples in long-distance relationships but more special and intimate for long-distance couples.

The atmosphere will be filled with fireworks, glitter bombs, confetti, rainbows, and butterflies.

10. Have a goal in mind.

Are we going to be apart for a long time?” “what about the future?” These are the questions you should ask yourselves.

In fact, a couple cannot stay in a long-distance relationship forever. Eventually, we all need to settle down.

So make a plan with each other. Set up a timeline, mark down the estimated times apart and times together, and draw an end goal.

Advertising

It is important that you two are on the same page and have the same goals. So that even if you are not living in the same space and the same timezone, both of you are still motivated to work together in the same direction towards a future that includes one another.

That’s right, you need some motivation to make a relationship last too. Find out more about what motivates you here.

11. Enjoy your alone time and your time with your friends and family.

You are alone, but you are not lonely unless you choose to feel like it. You don’t have to let your world revolve around your partner — you still have you, your friends, and your family. Take this time apart to do more with your friends and family. Go to the gym more often. Get a new hobby. Binge-watch shows. There are plenty of things for you to do that don’t involve your partner.

12. Stay honest with each other.

Talk about your feelings of fear, insecurity, jealousy, apathy, whatsoever. If you try to hide anything from your partner, that secret will sooner or later swallow you up from the inside out. Don’t try to deal with things all by yourself. Be open and honest with each other. Let your partner help you and give you the support you need. It’s better to look at the problem during its initial stage than to only disclose it when it’s all too late.

13. Know each other’s schedules.

It’s helpful to know when the other person is busy and free. So that you can drop a text or make a call at the right time. You wouldn’t want to disturb your partner when they are in the middle of class or halfway through a business meeting. Make sure you are aware of everyone’s small and big events in their lives, i.e., college midterms and exams, important business trips and meetings, job interviews, etc. Particularly if you live in different time zones, this becomes more important.

14. Keep track of each other’s social media activities.

Facebook and Instagram photos of each other. Send each other tweets. Tag each other on Facebook. Post stuff on each other’s wall. Let them know you care. Be cool with stalking each other.

15. Gift a personal object for the other person to hold on to.

Memories have power. No matter what it is–a pendant, a ring, a keychain, a collection of songs and videos, or a perfume bottle. Everyday items and things have meanings to us, whether we realize it or not. We all try to store memories in material things so that when our minds fail, we will still be able to look at or hold onto something that will help us recall our memories. This is why something so simple can mean so much to a person when others may see little or no value in it.

16. Get a good messaging app.

This is extremely important because texting is the most frequent and common way of communication the two of you have. You need a good messaging app on your phones that allows interactions beyond words and emoticons.

Personally, I use this messaging app called LINE. I find it highly effective because it has a huge reserve of playful and very funny “stickers” that are free for its users to use. You can also go to the app’s “Sticker Shop” to download (or gift!) extra stickers of different themes (e.g., Hello Kitty, Pokemon, Snoopy, MARVEL, etc.) at a low price. Occasionally, the app will give out free sticker sets for promotions. This messaging app is cute and easy to learn to use.

17. Snail-mail your gift.

Mail each other postcards and hand-written love letters. Send each other gifts across the globe from time to time. Flower deliveries on birthdays, anniversaries, and Valentine’s Day. Shop online and surprise each other with cool T-shirts, sexy underwear, and such.

18. Stay positive.

You need to constantly inject positive energy into the long-distance relationship to keep it alive. Yes, the waiting can be painful, and you can sometimes feel lonely, but you need to remind yourself that the fruits at the end will be sweet as heaven.

One good trick to staying positive is to be grateful all the time. Be thankful that you have someone to love — someone who also loves you back. Be thankful for the little things, like the hand-made letter that arrived safely in your mailbox the other day. Be thankful for each other’s health and safety.

Advertising

19. Keep each other updated on each other’s friends and family.

This will help you two to know each other’s culture and values. Knowing small habits of each other helps in developing an understanding and building mutual trust.

Talking about family and friends gives you more matters to talk about. The best thing to talk about is gossip and scandals.

20. Video-call whenever possible.

Because sometimes looking into each other’s eyes and hearing each other’s voices can make everything feel alright again.

A video call is though nothing like being together, but it’s the best thing and the most to do for coziness in a long-distance relationship.

21. Give each other pet names.

Because it’s cute. It keeps the lovey-dovey going. Having special names for each other reserved only for one another are heart-warming. Hearing that one word with love lifts our spirits up, and we feel assured all over again.

Chaos seems to fade away just by hearing that special word from someone special.

With the best wishes…

Love (or like) is a force that is beyond your control. Love just happens. The same goes for turning off those feelings, even when you get the perfect job halfway across the country.

Neither one of us expects to be long-distance in a relationship. But if you’re in a relationship like this, you’ll just have to make the most out of a difficult situation. These advice for long distance relationships will hopefully help you stay strong and cheerful when living apart from one another.

More Recommended Relationships Experts on Lifehack
  • Carol Morgan —  A communication professor, dating/relationship and success coach
  • Dr. Magdalena Battles — A Doctor of Psychology with specialties include children, family relationships, domestic violence, and sexual assault
  • Randy Skilton —  An educator in the areas of relationships and self-help

Featured photo credit: Unsplash via unsplash.com

Read Next