Advertising
Advertising

11 Things To Remember If You Love A Person With Albinism

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

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 How to Deal With Anger (The Ultimate Anger Management Guide) 2 The Hidden Power of Every Single Person Around You 3 The Purpose Of Friendship: The Only 4 Types Of Friends You Need In Life 4 14 Things That Make You Happy and Enjoy Life More 5 Focus On Yourself, Because Most Of The Time No One Really Cares

Read Next

Advertising
Advertising
Advertising

Last Updated on April 19, 2021

How to Deal With Anger (The Ultimate Anger Management Guide)

How to Deal With Anger (The Ultimate Anger Management Guide)

We all lose our temper from time to time, and expressing anger is actually a healthy thing to do in our relationships with others. Expressing our differences in opinion allows us to have healthy conflict and many times come to an agreement or understanding that works for everyone. However, there are times when anger can become overwhelming or damaging, and during these times, it’s important to learn how to deal with anger.

Expressing anger inappropriately can be harmful to relationships, both personal and professional. You may express too much anger, too often, or at times that are only going to make things worse, not better. In this article we will look at anger management techniques that will help you better control your emotions.

Let’s take a deeper look at how to deal with anger.

Expressing Anger

Anger is a natural and normal part of almost any relationship. This includes relationships with your significant other, kids, boss, friends, family, etc. Anger provides us with valuable information if we are willing to listen to it. It clues us in to areas where we disagree with others and things that need to be changed or altered.

Unhealthy Ways to Express Anger

Here are some common yet unhealthy ways to express anger that you should avoid:

Being Passive-Aggressive

This is a term many of us are familiar with. Passive-aggressive behavior happens when someone is angry but uses indirect communication to express their anger.

Some of the more common passive-aggressive behaviors include the silent treatment, making comments about someone behind their back, being grumpy, moody, or pouting, or simply not doing tasks or assignments that they should.

This is a passive-aggressive person’s way of showing their anger. It’s not very productive but extremely common.

Advertising

Poorly-Timed

Some people get overwhelmed and express anger in a situation where it can’t really do any good.

An example would be getting angry at one person in front of a crowd of people. All that does is make people uncomfortable and shuts them down. It’s not a healthy way to express anger or disagreement with someone.

Ongoing Anger

Being angry all the time is most often a symptom of something else. It’s healthy and normal to express anger when you disagree with someone. However, if someone is angry most of the time and always seems to be expressing their anger to everyone around them, this won’t serve them well.

Over time, people will start to avoid this person and have as little contact as possible. The reason being is no one likes being around someone who is angry all the time; it’s a no-win situation.

Healthy Ways to Express Anger

What about the healthy ways[1] to adapt? When learning how to deal with anger, here are some healthy ways to get you started.

Being Honest

Express your anger or disagreement honestly. Be truthful about what it is that is making you angry. Sometimes this will entail walking away and thinking about it for a bit before you respond.

Don’t say you’re mad at something someone did or said when it’s really something else that upset you.

Being Direct

Similar to being honest, being direct is a healthy way to express anger.

Advertising

Don’t talk around something that is making you angry. Don’t say that one thing is making you angry when it’s really something else, and don’t stack items on top of each other so you can unload on someone about 10 different things 6 months from now.

Be direct and upfront about what is making you angry. Ensure you are expressing your anger to the person who upset you or you are angry at, not to someone else. This is very counterproductive.

Being Timely

When something makes you angry, it’s much better to express it in a timely manner. Don’t keep it bottled up inside of you, as that’s only going to do more harm than good.

Think of the marriages that seem to go up in flames out of nowhere when the reality is someone kept quiet for years until they hit their breaking point.

Expressing anger as it occurs is a much healthier way of using anger to help us guide our relationships in the moment.

How to Deal With Anger

If you feel angry, how should you deal with it right at that moment?

1. Slow Down

From time to time, I receive an email at work that makes me so angry that steam is probably pouring out of my ears.

In my less restrained moments, I have been known to fire off a quick response, and that typically has ended about as well as you might imagine.

Advertising

When I actually walk away from my computer and go do something else for a while, I am able to calm down and think more rationally. After that happens, I am able to respond in a more appropriate and productive manner. Doing things that helps you learn how to release anger can make an uncomfortable situation more manageable before it gets out of hand.

2. Focus on the “I”

Remember that you are the one that’s upset. Don’t accuse people of making you upset because, in the end, it’s your response to what someone did that really triggered your anger. You don’t want to place blame by saying something like “Why don’t you ever put away your dishes?” Say something more like “Having dirty dishes laying on the counter upsets me—can you work with me to come to a solution?”

When you are accusatory towards someone, all that does is increase the tension. This doesn’t usually do anything except make your anger rise higher.

3. Work out

When learning how to deal with anger, exercise is a great outlet. If something happens that angers you, see if you have the opportunity to burn off some of the anger.

Being able to hit the gym to get a hard workout in is great. If this isn’t an option, see if you can go for a run or a bike ride. If you are at work when you become angry and the weather permits, at least go outside for a brisk walk.

Besides working some of your anger out through exercise, this also helps to give your mind a chance to work through some ways to address what it is that upset you.

If you’re not sure where to start with an exercise routine, check out Lifehack’s free Simple Cardio Home Workout Plan.

4. Seek Help When Needed

There are times when we could all use some help. Life can be stressful and overwhelming. It’s perfectly fine to seek some help from a mental health professional if it will help you get back to a healthy balance.If you find that you are angry all the time, it might be a good idea to go talk to an expert about learning to control intense emotions. They can give you some sound advice and ideas on how to get your anger to a more manageable and healthy level.

Advertising

5. Practice Relaxation

We all seem to lead incredibly busy lives, and that’s a good thing if we are loving the life we are living. That being said, it is very beneficial to our physical and mental well-being to take time out for relaxation.

That can mean spending time doing things that help us calm down and relax, like being around people we enjoy, practicing deep breathing or listening to music. It could be making time for things that help bring us balance like a healthy diet and physical activity.

Many people incorporate techniques such as yoga and meditation to calm their minds and release tension when learning how to deal with anger. Whatever your choice is, ensure you take time out to relax when warning signs of anger start to bubble up.

6. Laugh

Incorporating humor and laughter on a regular basis will help keep anger in check and help you get over a bad mood and feelings of anger more quickly. This isn’t part of formal anger management techniques, but you’ll be surprised by how well it works. Remember, life is a journey that’s meant to be enjoyed fully along the way through healthy emotion. Make sure you take time to laugh and have fun.Surround yourself with people that like to laugh and enjoy life. Don’t work at a job that just causes you stress, which can lead to anger. Work at something you enjoy doing.

7. Be Grateful

It’s easy to focus on the bad in life and the things that cause us negative emotions. It’s vitally important to remind ourselves of all the wonderful things in life that bring us positive emotions, things that we easily forget because we get caught up in the whirlwind of day to day life.

Take time out each day to remind yourself of a few things you are grateful for in order to help you learn how to release anger and invite in more positive feelings.

Final Thoughts

Life can be overwhelming at times. We seem to have constant pressure to achieve more and to always be on the go or motivated. People we are around and situations we are in can cause stress, anger, and negative emotions. At times, it can seem to be too much, and we get angry and our emotions start to get out of control.

During these times, keep in mind that life is an incredible journey, full of wonder and things that bring you joy. When you find yourself angry more often than is healthy, take time out to remember the good things in life—the things that we seem to forget yet bring us so much positive energy and emotions.

Use some of the tips included here to help with how to deal with anger and better control your emotions.

More Resources on Anger Management

Featured photo credit: Andre Hunter via unsplash.com

Reference

Read Next